An attempt to raise this issue through the Parliamentary system before it is too late.. ..maybe worth sending your own letter asap?

Lord Hunt is the opposition lead on the NHS, I understand.

Dear Lord Hunt,

I have been very concerned about the proposals to upload medical records from GP surgeries on to the new Care.data system. The process being employed is one of 'opt out' which requires that individuals have to take positive action to prevent their information being uploaded - their consent is simply presumed otherwise. My understanding that this is in violation of accepted data protection procedures.

NHS England have sought to extend their 'consultation' process by sending leaflets to 22 million households in England as a concession to many concerns raised at the end of last year. I understand that leaflets are currently being received by residents in Nottingham in 'junk mail' bundles - not addressed to residents and probably discarded by most households without consideration or concern.

There is very little public understanding of the issues around the care.data systems or the projected developments around new care delivery in the post-Lansley NHS which are being heavily promoted to NHS staff by Tim Kelsey of the the Health and Social Care Information Centre (HSCIC).

The local health bodies CCGs etc have been completely by-passed with individual surgeries being made responsible for the ensuring the transfer of data and for registering exceptions. There has, as far as I know, been no informed public debate or discussion to date. I attended a large public involvement meeting yesterday convened by 4 local CCGs with over 150 people from South Nottinghamshire - it was clear that there was a great deal of concern about this development and of the way it is being handled. Hardly 'no decision about me without me'! My sense is that the CCGs, having been effectively by-passed are 'keeping their heads down' and leaving it to individuals. The care provider 'industry' newly formed in the post Lansley world also appear to wish to avoid this issue as it seems that many planned developments are predicated on this system - again out of view of the patients, who are increasingly seen as passive consumers of health services despite the heavy patient involvement/engagement rhetoric.

Health and Social Care Information Centre (HSCIC) also includes social care data structures currently administered by local Government(?) - I am not aware of any consideration of the cross referencing of this highly confidential personal information being aired in public.

There are clearly serious equality issues that appear to have been totally overlooked. Not least the difficulty of 22 million households making informed choices about a serious issue with so little knowledge or information on which to base a decision. More directly the leaflet is being distributed as 'junk mail' in English and this is inaccessible for those with disabilities and for those who are not able to read English - inadequate as the meagre and rather unbalanced text is. My understanding is that there is a statutory duty to ensure equality through a thorough prior impact assessment - clearly this has not been done or if it has it is being totally ignored.

Very recently the stark challenge posed by the care.data scam has been set out at the following website - http://www.care-data.info/

I understand that you have responsibility for health issues in the House of Lords and would be grateful if you could raise concerns there and with your colleagues in the other House as a matter of great and pressing urgency.  I have alerted Chris Leslie , my local MP and have copied in Adeline who as you may know manages the KONP campaign. Wendy Savage suggested that I contact you directly following the debate with medical students at the University of Nottingham towards the end of last year which I attended.

I hope that you may be able to bring the spotlight of public scrutiny and democratic accountability on this vital matter before it is too late.

Yours faithfully

IanH