Here Veronica shares her personal experiences of the pandemic. She talks about the frustration of changes to her care being made with no explanation or opportunity to discuss them and shares her opinion of the experience of Black communities during the pandemic.
My experience started a little before the official lockdown. Working for a Local Authority, all staff were advised on Friday 13 March that all those who could, should work from home from the following Monday.
Having a series of Long Term Conditions, including a respiratory illness, meant that I became one of the country’s ‘shielded’ citizens. However, I did not receive any communication about this until three weeks after lockdown started, which came in the form of a letter. I then received a phone call from the team doing welfare checks from the Government. I struggled to get home deliveries for food, but despite this I was told that as long as I had someone was available that would be ok.
Accessing health and care services
My medical needs were a very mixed bag of instructions. My regular bloods service was initially changed to every eight weeks (previously four). I was required to go to my local GP surgery instead of the hospital to get this completed. At the same time, I was alerted by the GP that my usual B12 jab would be postponed for up to six months. Luckily because I had to have bloods done, they were able to complete this at the same time – a big concern about postponing this was that it completely conflicted with all advice I’d had before.
All appointments that were scheduled to take place were switched to telephone consultations which in circumstances worked as well as it could. The key thing for me was there was no level of negotiation to decide any of the things that changed. It was almost like the virus meant that there was no need to have a conversation, instead it was a case of ‘just do what we say’. If you did try to query things I found a level of annoyance at even asking the question. Personally I felt I needed to be sure my health was in fact the priority.
Prescription services became very fragmented and confusing resulting in me running out of medications before they could be replenished, and having to keep making calls to the pharmacy to check what was happening. Despite knowing that I was shielding, no system had been put in place for my medications that can only be prescribed by a Consultant. I was alerted that the prescription would be sent to my home but I was told that I could not order the item unless the pharmacy had the prescription, which resulted in a family member having to go and physically collect it.
The experience of Black communities and impact on inequalities
My frustrations have been with the different levels in which people have been negatively impacted by the virus, particularly those from Black communities, and how this was initially portrayed by those in positions of power who have tried to convince us that somehow this was a very strange and confusing thing. No links, until forced, were made about where Black staff are placed within the NHS, and that it was not just about their ethnicity that made them more susceptible to the virus, but their positions. Many affected have occupied positions at the lower levels of the organisations, due in part, to structural racism.
More frustrating was the need to commission a whole raft of new ‘research’ which would not tell us anymore than what we have known for a substantial length of time. Previous reports have provided evidence and recommendations to address inequality on all levels. What this has demonstrated is that disabled Black people are even more disadvantaged, given the level of racism and discrimination that exists within all key systems, including the health service. It follows for me, that a significant amount of work will need to be completed to even start addressing these inequalities, and enable better lives for everyone.
It is imperative that Black agencies, and individuals, are given an opportunity to input into the various re-set initiatives that have very speedily been put in place. In the spirit of Co-production and Patient Involvement, we must hope and push for much more inclusive engagement about how services might change in the future.
Author
Veronica Price-Job, East Midlands Patient Public Involvement Senate member