Don’t forget us!  My plea to Government for an action plan

Helen has secondary immunodeficiency and follicular lymphoma.  Below, she sets out her action plan below to ensure the immunodeficiency community is not left behind with the full easing of restrictions.

She says ‘Recent news states that an autumn vaccine booster plan is being considered and developed.  That’s good news but I would ask that consideration be given as to where the extremely clinically vulnerable fit within this proposed plan. Previously the rollout for the first 6 groups placed the extremely clinically vulnerable in Group 4. Within that group there are people like me where it is likely that the vaccine will have had little or no antibody or T cell response.

In these cases if a further booster dose is likely to trigger some or a higher response surely these people should be first in line for a booster vaccine. Given that the other groups are likely to be protected to a higher level it would make sense.

With the 19th July looming l would like to see an action plan for this group moving forward as l feel we are being left behind. Whilst the vaccination programme is great there are people, who are immune compromised, that need more reassurance given the high risk of infection and hospitalisation still – not just from Covid but pneumonia.

This is my proposed plan, from my point of view:

1. Booster vaccine/ antibody testing – Immunodeficiency patients should be prioritised for booster Covid vaccine, flu and pneumonia vaccines starting September and that antibody testing be rolled out to this group. Without it we are unable to understand our level of risk. We are told the ownership of risk rests with the individual.

2. Triage/ mask wearing/ telephone and virtual consultations – Moving forward I think the long term strategy should continue to use triage in hospital and community health settings and where possible a telephone or ideally a virtual consultation. Virtual consultations pick up body language.  Where a face to face consultations is necessary then well fitted face masks should be worn.  We need to be kept safe.

3.  Mandatory vaccination of Care Home/ NHS staff – I hope the government hold firm on mandatory vaccines for care home staff and potentially NHS staff and home care for the housebound.  I understand the individual right of a person to refuse but those being cared for do not have a choice.

4.  Access to treatments that will offer people with immunodeficiency protection against Covid – I understand that there are treatments such as COVID neutralising monoclonal antibodies and hyperimmune products high in anti-Covid antibodies that will give those with little or vaccine response some passive immunity against Covid.  These treatments should be prioritised for approval as soon as possible.

5. Support services – already I am having problems accessing services which have been delivered virtually as organisations head back to face-to-face group meetings e.g. support groups, exercise groups. People seems to have forgot that l cannot participate unless it’s virtually. My world is going to get smaller again if this is not addressed by extending funding to allow community and voluntary services to continue virtual support.

What are your views?

Posted 30th June 2021