Amanda Pritchard, who's the CEO of NHS England.
[Amanda] What we're trying to do is a bit more of a national campaign around awareness of sickle
cell disease and use that as an opportunity, I guess, to kind of draw attention to
both some of the really great stuff that's going on and how we can improve care but
also some of the things that still need to change. One of the things I'm really keen
to do is just hear more about your experiences. They see that you know, I'm walking and talking
and I'm relatively young so they were like "oh, there's nothing wrong with you". The worst one
I feel is the calling us you know "drug seekers" and you know, you don't look like you're in pain
and stuff like that when you come into A&E. And I just think, if it was any other illness affecting
white people — I'm gonna be honest — we would not be getting this treatment.
I was really in so much pain, like crying for hours and it took ages for anything to be done.
And their excuse was "oh cos we're short staffed", and obviously with like morphine and stuff you
need two nurses to sign it off. And you can hear me screaming in pain. It's just a constant battle
and it's traumatic. [Amanda] Yeah, well I can see goodness me, thank you for sharing that because
that obviously brings back a really traumatic memory for you, and that should just never happen.
It would be really good to come back to kind of what do we need to get right so that sort
of experience doesn't happen, but thank you. [Stephanie] Sorry for crying. [Amanda] Well
we're the ones who should be saying sorry for you actually, that you have had to go through that.
First of all, I don't know if a lot of nurses, and regardless of whether they are agency or not, they
should know the basics around sickle cell itself. So I think, the fact that there's just not care
and understanding of what sickle cell is, it then creates a furthermore of "oh well, he's just in a
bit of pain right now, we'll sort him out in a bit". It's just that feeling where they don't
seem to realise that a sickle cell crisis is an emergency. The outpatient care is really great,
my haematologist is great — I don't have any issues in that way — but that A&E is just
really really terrible. I mean it's not about one organisation, this is about the NHS and our
overall response and how we deal with things. Like everyone's saying, it's about the training, it's
about the level of education, and understanding, and compassion. It's making sure it happens,
yeah. Thank you very much indeed.
Emma and I have had a conversation,
you know, we knew that we needed to make some improvements. So actually, and you know we had
a chat and we thought, you know, we don't want to change the things we think might need changing,
actually we need to hear from the patients what's important to them. One of their priorities was
when they first come in, they would like to improve the time for their first pain relief. A
lot of people are saying this person's difficult, this person's abusive, and then I would go in and
see them and they just seemed scared. I think it came from misunderstanding and a little bit
of ignorance sometimes as to what the sickle cell patients were going through. And now it's really
exciting, because we've got a group of emergency medicine doctors, some junior doctors who were in
emergency medicine and now in haematology, and a really kind of strong push from the senior
nursing team in the emergency department. As well as different strategies to try and cut down
the time to analgesia like bringing the senior emergency doctors to the patient much earlier on
in the journey. A ward that is opening, it's a refurbished ward, sort of reconfigurating again,
and it's going to be opening in hopefully the summer and it's going to be sort of
designated haematology and then the second half gastroenterology. So there will be a ring-fenced
number of beds for patients, which means that we'll be able to really focus on skills,
training for nurses, people who are interested in looking after and nursing you know haematological
diseases and gastroenterology as well, so its specialist. So the patient group I think, sort of,
think that's good news to them, and then in that ward area there is an area where we're
kind of thinking we could probably do like a direct access for patients.