News

New consultation and proposals could back track on payments

The Birchgrove Group is disappointed to see that yet another consultation and new proposals have been issued by the Department of Health which again could negatively impact those affected by HIV/AIDS from contaminated blood.

This new consultation and proposals, if they go ahead, would make substantive changes to the scheme which was announced in July 2016.

These proposals appear to be a way to address the disparity in payments to hep c stage 1 beneficiaries. The consultation is proposing a 'Special Catagory Mechanism' (SCM) designed to assess if those with stage 1 hep c are impacted enough to receive the annual payment levels of stage 2. This would effectively establish a new interim stage that provides the annual payments of stage 2 but not the additional £50k lump sum.

However the new proposals do little to reassure others affected by contaminated blood that they will not be negatively impacted by additional aspects of these proposals should they go ahead.

For example:
There are proposals to not proceed with previously announced increases to annual payments for 2018/19 but instead refer people to the SCM when it is up and running. For those not eligible for the SCM, such as those living with HIV only, the previously announced increase of £3000 may now not happen and as such a small but hugely impacted section of our community will not see any real world increase in support. For those already living with HIV and stage 2 hep c they could see £6000 pounds worth of previously announced increases now not happen.

The consultation gives no detail as to how the SCM will ascertain which condition, HIV, hep C or a bleeding disorder, is repsonsible for symptoms. It asks two questions:

"Does your hepatitis C infection or its treatment make it difficult for you to carry out regular daily activities, such as leaving your home, using public transport or shopping for essentials, as a result of mental health problems (such as feeling depressed or anxious)? and Does your hepatitis C infection or its treatment make it difficult for you to carry out regular daily activities, such as walking more than 50 metres, climbing stairs, lifting objects from the ground or a work surface in the kitchen or physical tasks such as gardening as a result of chronic fatigue (such as feeling tired all of the time)?" 


All those living with co-infection and a bleeding disorder will be familiar with these symptoms, but identifying a definitive cause for the them is near impossible and is in all likely hood a combination of all three conditions. Therefore as the SCM is to look solely at hep c and its effects ("The scheme assessor will be looking to make a judgement as to whether the problem experienced is substantial and long-term, and whether it is related to the applicant’s hepatitis C infection (or its treatment).") those with co-infection may find it diffcult to provide sufficient evidence and medical opinion in regard to hep c infection despite experiencing significant physical and mental illness because of it, or in combination with other conditions. 


There is also no mention of increasing the utterly inadequate £10k payment for those who have lost husbands and wives to contaminated blood, a group which appears to be perpetually forgotten by the Government here in England. 

Regardless of if these latest proposals pass they still fall far short of what has been agreed in Scotland for the HIV/AIDS affected community and the proposal states clearly that the funding is in place only until 2021 when 'it will be for future Governments to decide on funding levels going forward', so there is no security or peace of mind for anyone regardless of which group they fall into.

While we agree the SCM and its aim of addressing the disparity in payments to those with hep c stage 1 is correct it appears to only be possible by withdrawing previously announced payments which highlights the fundamental flaw in contaminated blood support. The schemes have never been, currently are, and look to continue to be woefully underfunded. Until this is addressed, and is backed by legistlation guranteeing funding for the life of the scheme, there can be no solution that will be acceptable to all those affected by contaminated blood.

As such The Birchgrove Group has no choice but to reject this consultation and proposals and remain committed to achieving levels of support at least equal to those agreed in Scotland for those infected and affected by HIV/AIDS, co-infected with HIV/AIDS and hep C and their families.