Caitlin Farrow – Chair of Blood Cancer Alliance Policy Group, writes
On behalf of: ACLT, Anthony Nolan, Blood Cancer UK, CLL Support, CML Support, DKMS, Leukaemia Care, Leukaemia and Lymphoma Northern Ireland, Leukaemia Cancer Society, Leukaemia UK, Lymphoma Action, MDS UK, Myeloma UK, Race Against Blood Cancer and WMUK.
‘Freedom Day’. A day for celebration when the shackles can be thrown off, and life can return to normal? Instead, for blood cancer patients and other people who may be immunosuppressed in England, the day brings with it feelings of fear, confusion and uncertainty as they risk being forgotten about in the great push to remove restrictions.
Blood cancer patients face a double whammy. Research has shown that people with blood cancers are at higher risk of serious illness from COVID-19 both due to the nature of their disease and the treatments that they receive. Emerging evidence also suggests that vaccines are much less effective for this group.
As the Blood Cancer Alliance, a coalition of 15 blood cancer charities, we have made it clear to the Government that it must do more to support and protect blood cancer patients, but our recommendations have fallen on deaf ears. The new advice and guidance published earlier this week risks leaving people with blood cancer, who are often immunosuppressed, behind. It does precious little to keep public places safe for vulnerable people, nor to offer financial protection to those who cannot return to the workplace, and it fails to communicate to employers on their responsibilities to people for whom the vaccine might not work.
Unsurprisingly, there is a heightened fear of easing restrictions amongst the blood cancer community, especially at a time of rapidly rising infections. We are still in a public health crisis, but by lifting all restrictions and publishing generalised and ill-informed guidance, the Government has inexcusably put the onus people with blood cancer to protect themselves, rather than offering them the protection and the support they need.
The answer is to appoint a designated clinical lead in Government for people who are clinically vulnerable to COVID-19 and the development of a cross-governmental strategy for supporting people who are clinically extremely vulnerable. The strategy must be guided by evidence from existing studies about responses to vaccines rather than making generalised assertions about levels of protection. We urgently need more investment in research to help us understand how effective vaccines are for this vulnerable patient group and what treatment options there are.
If restrictions are to be lifted completely, then there are practical measures that can be introduced to help provide blood cancer patients with the security that they need and deserve. The reinstatement of shielding support, including automatic access to ESA and SSP, providing guidance to employers, the continuation of the furlough scheme for those employees whose jobs make it difficult for reasonable adjustments to be implemented, such as those working in hospitality or caring, and affordable supermarket priority delivery slots.
A clear messaging campaign that encourages both the general public and the immunosuppressed to maintain social distancing and for all to wear masks in enclosed public spaces will help to provide comfort for blood cancer patients anxious about protecting themselves.
We would all like to unlock and return to some sort of business as normal. But we need to do this in a way that is safe and supports those who are most vulnerable. The current guidance and approach of the Government is a far cry from this. As representatives of the blood cancer community, we cannot stay silent. It is our duty on behalf of all of those we represent to ask the Government to do its duty properly and protect people with blood cancer.