Inquiry report launch event

On 24 February, the APPG held a launch event for the inquiry report. We had powerful presentations delivered by Fiona Loud (Policy Director at Kidney Care UK), Natalie Goodchild (advocate for Cystic Fibrosis patients), Dr Susan Walsh (CEO of Immunodeficiency UK), and Dr Richard Vautrey (GP and Clinical Director of a Primacy Care Network in Leeds).

It was noted that:

  • 18% of Kidney disease patients didn’t know they needed to shield.
  • There was poor communication on who should be shielding. It took until October 2020 for people on dialysis to be added to the list.
  • The ability to exercise, necessary for managing certain conditions, was restricted. There was no priority access to exercise facilities as there were for supermarkets.
  • There was reduced access to hospital and medical care. The minimal face-to-face contact made it difficult for physical examinations.
  • Enquiries to Immunodeficiency UK’s helplines doubled in 2020 compared to previous years.
  • Charities had to take on responsibility for creating bespoke guidance.
  • High anxiety, fear and loneliness among patients are key concerns of charities.
  • GPs had issues identifying who were in the CEV group.
  • CEV patients are still hesitant to come in practices for treatment or assessments.
  • Going forward data should be collated in one place so that accurate information can be accessed quickly and shared with patients.
  • We have to keep the message going that the pandemic has not gone away and needs to continue to maintain focus on the vulnerable group.
  • We need to prioritise research and use of prophylaxes.
  • We need to have a DHSC lead for the clinically vulnerable.

Praise was also given to the inquiry report.

  • Fiona Loud noted that the report is to be recommended for highlighting that some vulnerable people are not being supported by employers.
  • Susan Walsh commented that the report “would have made a huge difference to the lives of people I represent.”
  • Natalie Goodchild - “This report being undertaken goes a long way to helping this community feeling valued”
  • Baroness Brinton – “The report is excellent. The recommendations are really really strong”

 

 “Our problem has been to raise our voice to one that has got attention. I have been simply horrified by how our voice as been muted at every level during this debate…at every level we have struggled to get the case made effectively”- Lord Mendelsohn

 

 

I’m not on the high-risk list despite my consultant saying I should be...I’m disappointed and angry at the flaws in the system that meant that I didn’t get that priority PCR test. I’m fed up with promises made and not being lived up to as part of the vulnerable community.” - Immunodeficient patient testimony

 

 

“We do need to be led by experts who understand the condition that we’re protecting people against” - Richard Vautrey

 

 

“We now suddenly have this great divide between political announcements and the clinical reality”- Baroness Brinton