Scottish Infected Blood Support Scheme (SIBBS) various questions: FOI release

Information requested

1) Since the introduction of the Scottish Infected Blood Support Scheme (SIBSS) in 2017 until the latest available date, has any NHS spending been allocated towards the palliative or medical care of Stage 2 infected blood victims in Scotland? If so, when was the funding introduced, and how much money has been allocated for each year of available figures, and what planned amounts are allocated going forward?
2) If, as above, specific NHS funding was made available for the care of infected blood victims, how was this money spent? e.g. on palliative or medical specialists in specific diseases such as HCV or HIV, on other types of related health care such as mental health support? To clarify, I would like a breakdown of specific spending on care or support for infected blood victims in Scotland since 2017 which would be additional to standard palliative care for cancer victims.
3) How many infected blood victims and/or their families benefited from such additional funding, and which NHS trusts benefited from any such additional provision?
4) Can the Scottish government provide a figure of how many infected blood victims have died since January 2017?
5) Has the Scottish government received any additional funding/support under the Barnett formula or has it received any other funding towards the medical and care costs relating to Infected Blood victims?
6) Does the central UK government provide any funding or additional support towards the SIBSS, and/or towards the care of victims suffering from more serious Stage 2 illnesses such as cancer or cirrhosis of the liver?

Response

Questions 1, 2 and 3. While our aim is to provide information whenever possible, in this instance the Scottish Government does not have the information you have requested in relation to how much NHS spending been allocated towards the palliative or medical care of Stage 2 infected blood victims in Scotland or how this money was spent. However, all medical treatment for those with advanced hepatitis c (HCV) who are resident in Scotland is delivered by Scottish NHS Boards. NHS Boards fund this treatment for HCV or any other medical conditions those infected may suffer from via their overall funding from the Scottish Government. Palliative care for all those who live in Scotland is delivered by a number of bodies, including Health and Social Care Partnerships, NHS Boards, local authorities and the third sector and where a patient is cared for is likely to depend on their own circumstances and preferences (such as whether they need to be in hospital or whether they can or wish to remain in their own home). The Scottish Government does not hold data on the costs of medical treatment or palliative care provided to infected blood victims.
The reasons why we don’t have the information are explained in more detail in the Annex to this letter.
Question 4. Based on the information we have received from NHS National Services Scotland (NSS), 33 infected beneficiaries of SIBSS have died between 1 April 2017 and 30 June 2019.
SIBSS began operating on 1 April 2017 so the scheme does not have any information on deaths between 1 January and 31 March 2017. In addition, we only hold information regarding SIBSS beneficiaries so do not hold information regarding numbers of deaths of those infected via infected blood who may have been beneficiaries of other UK infected blood support schemes or those who were infected outside the UK.
Question 5. The Scottish Government has not received any additional funding/support under the Barnett formula or any other funding specifically for medical and/or care costs relating to infected blood victims.
Question 6. The UK Government does not provide any funding or additional support for the care of victims suffering from advanced HCV (such as liver cancer or cirrhosis). However, the UK Government does currently provide some funding to the Scottish Government to support SIBSS costs in relation to those infected with HIV and their widows, widowers, civil partners or long-term partners.

ANNEX
Questions 1, 2 and 3 – further information
Section 17(1) of FOISA (information not held) requires the Scottish Government to notify you if it does not have the information you requested. It is worth clarifying that the Scottish Infected Blood Support Scheme (SIBSS) provides financial support to those who are infected with hepatitis c and HIV who were infected via infected NHS blood, tissue or blood products and can also fund additional support those who are infected may need beyond what is available from other public sector bodies, such as for care. This is available to all those scheme beneficiaries who are infected and who need this support, including those with advanced hepatitis c (Stage 2).
Therefore, in relation to your question 3, there are no NHS Trusts in Scotland and as noted on page 2 of this letter, we cannot provide this information. It is however worth clarifying that NHS Boards have a duty to provide treatment to all their patients who need it and in particular treatment for HCV or HIV in Scotland is available to those who wish to access it (where it is clinically appropriate for them). Total funding for the Scottish Health and Sport Portfolio in 2019-20 is over £14 billion.
This is a formal notice under section 17(1) of FOISA that the Scottish Government does not have the information you have requested in your questions 1, 2 and 3.

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