Intro Welcome to NHS England’s Health Inequalities Improvement Programme’s Sickle Cell Podcast Series.

Stephanie George, Patient Advisory Group Member Hi everyone, I’m Stephanie George and I’m a member of NHS England’s Sickle Cell Patient Advisory Group.

Dr Dianne Addei, NHS England I’m Dianne Addei, I’m a consultant in public health medicine and NHS England’s Health Inequalities Quality Improvement Programme for sickle cell. NHS England is supporting the opening of seven sickle cell disorder emergency department bypass units. I’m delighted to hear more about the unit in Manchester and how it is helping staff like Chelsea and Carly.

Chelsea Soka, Manchester University NHS FT  Hello, my name is Chelsea Soka, I am the lead haemoglobinopathy nurse here at MRI.

Carly Honey, Manchester University NHS FT  My name’s Carly Honey. And I’m the ward manager for Ward 10 at the Manchester Royal Infirmary, which is the new hyper acute sickle cell unit. We went live in December, January of 2023-2024.

Chelsea Soka, Manchester University NHS FT I’m really excited to see where improvements in sickle cell care are going and seeing the opening of the sickle cell unit has been an amazing thing to witness and be a part o

Carly Honey Manchester University NHS FT  Findings from the NHS paper clearly demonstrated that patients with this condition, were waiting lengthy times in EDs [Emergency Departments], and we maybe weren’t picking up on the signs and symptoms of potentially life threatening points with their condition.
So, the purpose of the unit is to improve access, to make sure we’re meeting national guidance in terms of pain relief administration, and to make sure that we’re able to pick up on those worrying and concerning signs and symptoms for these patients.  To protect them from harm or prevent any further harm, treat them, get them home as quick as they can, because they can be known to have a number of admissions which can be quite be quite debilitating and quite impactful on their life.

Chelsea Soka, MFT  Our sickle cell patients have obviously lived with the condition all their lives. When each patient comes to clinic, we will talk to them about what a home care plan consists of, so they know how to manage it at home.

It will be paracetamol, ibuprofen, for some patients they do have cocodamol or codeine, morphine, but some patients if they’re allergic to morphine, they might have other drugs like oxycodone or fentanyl, but each care plan is essentially standardised. It’s digital, so it’s attached to every patient’s notes.
And they [patients] also know when it [their sickle cell crisis] does need escalating and when they need to present at a hospital. With our unit, we are telling patients when your pain is roughly around a five or six and you know you’re going to need hospital intervention, you’ve maxed out all your options, call our 24-hour triage line. So, it doesn’t matter if it’s three am or seven pm whatever the case be, you can call and speak to a nurse who has been trained in sickle cell. Get advice and they will obviously liaise with you and let you know whether you need to come in.

Carly Honey, Manchester University NHS FT So, we want to try make it as quick and as seamless as possible. So, the purpose of the unit is our nurse in charge will hold what we call a triage phone. We will go through a triage tool to make sure that their sickle cell is the primary problem and that there’s not anything else that might be, you know, causing this because obviously you are at risk of other things really with sickle cell disease, other complications. We need to make sure we’re the right place for you.
We will then make sure that you’re able to get to hospital safely. That might mean we may need to contact an ambulance. We might still send you to EDs [Emergency Departments]. We need to make sure that you get there safely and that the nursing charge is aware of you and what we’re worried about, or we might bring you directly up to Ward 10.

We keep in contact with you until you arrive at the hospital. Once you arrive here, you’re brought into our what we call our ‘Same day access area’ on the ward. We will get you seen by a doctor and we’ll give you analgesia within 15 to 30 minutes of your admission with no waiting time.

Chelsea Soka, MFT From when you get the pain relief, you’re obviously assessed and then we would take it from there. See whether you need anything else, whether it’s antibiotics, more pain relief, and based on how the patient judges it, if they’ve got it quite early, it doesn’t [necessarily] need to be a hospital admission, where they’re there for 24 hours. In some cases. it can be, but not always. But we kind of want it to be like a fast flow.

Carly Honey, Manchester University NHS FT  And we’ll make sure that you have the necessary tests. And if we decide that you need to be admitted and we can’t just treat your crisis then and there with pain relief, maybe a bit of IV fluids, we’ll admit you directly into one of our side rooms. And that’s the privacy and dignity really, whilst we are doing all those necessary tests and we’re getting on top of that acute pain.
When we do move you out into the main ward area, once you’re stable and ready to do so. And quite often, some of our patients will meet other sickle cell patients during their admission. We do get a lot of feedback; ‘It’s nice to meet other people with a similar condition to myself’.

We have community services coming in. They do a ward round on the ward, and they review all the patients while they’re in-patients to check-in and we link in with them [the community team]. We attend the MDT [multidisciplinary team] as they [the patient] are moving out into hospital to hand over any concerns, and that just provides that continuity of care. And our sickle cell patients will know that they can see their ward nurses, they can see their specialist nurse and they can see their community nurses, whilst they’re on the ward and that we’re all picking up on the identified concerns.

Chelsea Soka, MFT  Depending on the patient situation and what they have been admitted with, it [the unit] definitely can aid to a quicker discharge process. We also have a really good community team who do follow up care. So, if it’s a normal, simple, painful crisis, patients can come have some pain relief, potentially stay up to 24-hours, be discharged and then followed up by one of the consultants on the following Tuesday or Thursday.

Some patients have had it where their admission has been up to a week in total, but we try to reduce that as much as we can to promote autonomy and just the patient getting back to their norm.

Carly Honey, Manchester University NHS FT  No, no, absolutely. We would try and avoid an admission where possible. A lot of sickle cell patients don’t want to be in hospital. You know they want to be able to go home if they can and if they to do so as quickly as possible. A lengthy admission does impact your life, especially if you’ve got a job, you’re at university, you’ve got exams coming up.

A lot of people, if it’s safe to do so, would much rather be at home and that’s the right place for them. So, you know, getting them up, getting them into our same day access area, getting on top of the pain relief and treating the immediate signs and symptoms, making sure there’s nothing worrisome. We try to get them home in the same day where possible.

Chelsea Soka, MFT  Based off our own patient’s experiences and also the ‘No one’s listening report’ it is evident that in the past, some patients weren’t receiving the analgesia within the 30 minutes. So, by this unit opening it can ensure that this happens for our patients.

Carly Honey, Manchester University NHS FT  And that is something we audit, time to admission, time to administer [analgesia].
And that’s something that we track month-on-month, just to make sure that we’re meeting it, and that the staff are aware of it.

We do that [tracking] with our operational managers and here locally on the ground, and them we have specialists as well. Sickle cell patient feedback forms, which is very bespoke just to them, on how to assess the service.

We’re currently building on that capacity [time to administer analgesia] further and we’ve just successfully been able to identify a budget for our nursing charge to become nurse prescribers to reduce that time even further. So, we’re not waiting for the medic to come up to the ward. We can prescribe straight away from the second patient hits the ground, their analgesia, anti-sickness and any antihistamines. And we built that again, as an order set, on our digital systems.

Chelsea Soka, MFT It’s also promoting trust and better safety and equality and diversity. Our patients know that they’re going to be treated properly. If they’re coming to a hospital setting, they are looking for some sort of help, so knowing that it’s definitely gonna be delivered, it can produce more safer care.

Carly Honey, Manchester University NHS FT Things don’t stop just because they go into hospital. We’ve received funding for two iPads on the ward, that’s to support people continuing their college work, continuing their university work, can they log-in and do some work from here [the unit]? And that just supports them with their day-to-day life, career or anything like that. We’ve got to support that and try and normalise it.

We support the people completing their exams, so we’re giving people sort of day leave, making sure that they’re safe to go, we’ve got on top of their pain relief., you know, So, they can go and sit their exam and return to the ward because they’re not yet quite ready to go home. But sometimes these things can’t be rearranged, so when safe to do so, we support it.

We also supported leave of absence for mental health. For some people it might have had very adverse effects coming into hospital with their sickle cell, and it’s about working with them in a correct management plan for them. So it might be that they get to go home for a couple of hours a day and that settles them, again where safe [to do so]. If it’s not safe, we wouldn’t allow that, and we do work with our patients. I guess the other bits of feedback that we get is that we’re continuous source of support. Some people will phone the triage phone, not just about being in sickle cell crisis, but, they might want to say hello, they might have a question, they might need to make an appointment. We are a warm, friendly voice over the phone that they know and trust. And that’s been one of the most impactful things as well on people’s day-to-day life. It gives them confidence knowing that we know them, we know about their condition, and they’ve got somewhere to go where they’ll be listened to.

Chelsea Soka, MFT  So here at MRI [Manchester Royal Infirmary] me and two other nurses, we deal with the acute side. We have a ward round every single day, where we link in with the community nurses, so they can actually meet our patients. And then based off that, we both do like a holistic needs assessment. So for example, for the patients who are at university or college, who might need some sort of evidence that they’re having a crisis, we can do letters.

When the patient is discharged, if they need any additional follow up, if they need the medications explaining to them, then the community nurses can actually go out and do further assessments. For example, our older sickle patients, who may need adaptations like help with physiotherapy and things, the discharge nurses can come out and help support and facilitate that. Us nurses, the consultant, the discharge nurses and sometimes the psychologist or social worker run hot clinics run on Tuesday and Thursday.
So we want our patients to really feel like whatever aspects in life, whatever’s going on, we care about them holistically. It’s not just when they’re having a crisis, it’s also how the crisis can impact, their overall life.

Carly Honey, Manchester University NHS FT The benefits for the patients, are also the benefits for the staff. The impacts and the confidence in the service it had and the rapport that we built up the patients and the trust that we’ve got. We’ve got people commuting from all over the country now, to come and access this service, because they have such faith in it. They know it’s a place they can go. They know the nurses know about their condition. They know, we know how to treat everything. And they have absolute faith.

They also know that we’ll try to get them out as soon as possible, and we’re working with them for what they need and they feel like we’re on their side and that’s unbelievably rewarding as a nurse.

You know you want to make sure that everybody has a fair access to healthcare and you want to feel like the care that you’re giving is good and effective and it’s safe. We’ve had zero patients safety incidents since we’ve gone live.

We have just that faith and that rapport, and it’s just really tangible to feel and the staff feel like they’re doing a good job. They feel that what they do is really rewarding. And the patients tell us, they write us letters, they do things like this podcasts, they want to share this. They think it’s, you know, the best thing ever. Yeah I guess the two are in tandem, seeing the patients get what they want and need, kind of does that for the staff as well. It gives them a job satisfaction.
They love the speciality. They’re really proud of the service that they developed.
It’s giving them that identity and I guess that shared common goal with sickle cell patients to improve outcomes.

Carly Honey, Manchester University NHS FT  There’s lots of benefits, I guess, to setting up a ward. It can be busy, can be quite stressful at times, so I was responsible for the recruitment of all of our workforce and we had a good six months before we opened the sickle cell unit to train everybody to be a nurse, a care support worker, a ward clerk, a housekeeper, you know, everybody had to learn to do the day-to-day bread and butter job first and foremost, before we started integratingmthese specialist skills.

We generated a set of nursing competencies, a framework which was based on NHS England national guidance, patient feedback from areas they currently used in the hospital and we held walk arounds with patients, so we could continually get their feedback as we were coming up to opening. What they thought skills nurses should have, to make their stay in their experience better.

We looked at hospital admissions and ED. What clinical skills do they need? If you’ve got ports, we need to make sure all the nurses can access ports. Can they cannulate? Are they able to give bolus as IV? All of those complex skills that make it slightly different? Can they hold a triage phone? And we, we looked at lots of different, you know, examples of triage such as Manchester Triage tool in Ed. And then we worked together with our clinicians.

So, we pulled all of that together and we had a good 6-7 months opening, training the staff to be general nurses before we introduce a sickle cell elements. I started to train everybody and work through that training plan. And as I said, it’s gone really, really well. But we pulled in a magnitude and say

My previous role working in digital has been quite helpful. We use the epic system hive, so luckily I’ve had networks in order to sort of build our triage area. Our direct area on HIVE and make sure that the system reflects how staff are going to clinically work on the ground. So making sure we had those done, we walked through those dress rehearsals ahead of opening and make sure that everything aligned and worked together.

It’s not easy. It’s been a lot of work, but the beauty of it is I got to pick my own workforce. I got to train everybody up to an excellent standard and become excellent general nurses. And then we’ve been able to train all of the staff, in all areas of sickle cell that are important to patients, consultants, specialist nurses, and NHS, England’s national guidance and it’s gone well.

Chelsea Soka, MFT  We’re even looking at improvements ourselves all the time. However, I would say in regards to a top tip, you definitely need a whole ward if you can. We’ve been gracious enough for NHS England to fund us for two rooms. However, the rest of the ward is just a generic ward. So, if if the facilities are available – quite a lot of space would be great. Definitely training for the nurses who are going to be looking after the patients. And that can be on going, making sure that new staff nurses that join the ward they’re trained. Reducing stigma. This whole thing of sickle cell patients are opioid seekers, we don’t like to go down that route. We don’t like to hear that. Obviously, the patients come for pain relief. That patient deserves to be listened to. If somebody’s in pain, you’d give pain relief.

Carly Honey, Manchester University NHS FT The benefits to patients is just phenomenal. It really, really is on so many ways. The reduction in harm, the confidence that you see, the patient experience and it’s been a really, really like fantastic project to get over the line. And I’d say that it is really meaningful and it’s really powerful and it’s really import to the people on the ground, these units are upscaled across the country. As a registered nurse. I don’t think there’s there’s anything more worthwhile, than to make sure that the care that you’re giving to this patient group is effective and safe and accurate and that you’re minimizing barriers for people to healthcare. And, you know, the success of this. Project is still yet to be realized. It’s still yet to be felt. But it’s been very, very worthwhile.

Chelsea Soka, MFT  Sickle cell care is definitely changing. I think it’s improving. Like I said, I’ve only been overall in this role for about 3 years and I’ve seen so many things come out, I’d really advise patients to invest in their care. I have heard some patients say they don’t like coming to hospital based off experiences that they’ve had in the past. However, I really want them to know that this is changing and we are listening. And they can trust us.

Carly Honey, Manchester University NHS FT Get in contact if you need any support with any of that, or you want to have a look at the work we’ve done.

Dr Dianne Addei, NHS England Thank you to Chelsea and Carly. It is great to not only hear about the sickle cell emergency department by-pass unit and the positive impact it is having on staff, but also the compassion that staff have for their patients and how they are using technology to enable patients to keep up with their education and check-in with work.

Stephanie George – sickle cell patient Sickle cell crisis is not only painful, but can be life threatening. It also interrupts our daily lives and I know people currently living in an area that doesn’t have a unit will be asking what can be done to improve their care. NHS London, NHS England, The Sickle Cell Society, Sickle Cell Specialist and Oxford Patient Group have worked together to create ACT NOW.

Dr Dianne Addei, NHS England We know the importance of providing a rapid and effective response to patients in a sickle cel crisis. In the first podcast Rossby talked about the importance of empathy in supporting patients to deal with their serious pain. In a later podcast, Anthony explains the impact of being cold when you have sickle cell. Analgesia, compassion and triggers are just three of the eight components of the ACT NOW approach to a sickle cell crisis. Here to tell us more about the ACT NOW acronym are Kathy, Izzy and Amanda.

Isabel Adams (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT)  Hi, I’m Isabel. Most people call me Izzy. I’m an education nurse for haemoglobinopathy across our HCC region, which is the West Midlands. I spend a lot of my time teaching now, previous to that I was a clinical nurse specialist.

Amanda Cope (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT)  Hi, I’m Amanda. I am an advanced nurse practitioner in haemoglobinopathies at Birmingham Children’s Hospital. Part of my role I see patients when they come in unwell on the ward, I also do outpatient clinics and get to know all of our lovely families in the outpatient setting as well. As part of my role, I’m also one of the lead nurses for the HCC (haemoglobinopothy coordination centres) in paediatrics.

BRENNAN, Kathy (NHS ENGLAND – X24)  Hello. I’m Kathy, Kathy Brennan. I started training as a nurse and I was 18, a long time ago. And then worked in direct patient care children’s services, but I moved to NHS England, gosh, about six years ago now. So, I’m the lead for the specialised clinical networks and I work with the quality team as well in NHS England, London. 

BRENNAN, Kathy (NHS ENGLAND – X24)  The ACT NOW acronym. It’s an aide memoire that’s quick and easy and visible, for clinical staff to know what to do, when a patient comes in a crisis. And the aim – they will give a rapid and appropriate response. It’s published in the Royal College of Emergency Medicine guidance on responding to a patient in a sickle cell crisis. 

This came out of the response to the ‘No One’s Listening Report’ which showed gaps in understanding and awareness for clinical staff in how to respond to a patient in a sickle cell crisis. So, ACT NOW acronym was a recommendation from patients from clinicians, from commissioners, from networks, basically everybody on the back of a big learning event that we held back in April 2022. Everything that’s within ACT NOW in terms of the guidance has come from consensus, to get that expert feedback and opinions from both patients and from clinical staff on what we need to do. 

The ACT NOW acronym:

A is for analgesia and as colleagues have already said that the big issue for a patient in crisis there in a lot of pain. And so, it’s about getting prompt analgesia.
and C is actually around compassion and this was strong feedback from patients, families, but also from clinical staff. We need to actively listen. We need to engage.
We need to show compassion.
T is all about the tests and the triggers. So listing the tests that you need to do as a clinician and to consider the triggers that might be happening, why is this particular patient in a crisis? is really important to understand and also the treatment.
Do they need intravenous fluids? Do they need oxygen? Do they need antibiotics?

The N is about notify. So who do we need to notify? And actually it’s their haematology team, the specialist team that really knows this patient needs to know that they’re in hospital or in the back of an ambulance, whatever it might be, in a crisis scenario. And then the other notification is next of kin.  They may actually say no, I don’t want my next of kin notify, but it needs to be in there because often they need an advocate. If you’re in severe pain. You can’t sometimes get the message across.
O is oxygen. It’s about making sure patients get oxygen, the parameters, but also patients saying ‘I need oxygen’. It’s listening to the patients and what they’re asking for.
And then the last one for W so that’s about watch and warm. Continuous observation, so really making sure you’re keeping an eye on this patient. Are they deteriorating further? Do you need to escalate? Are you continuing to monitor and understand their pain condition, there core condition. 

And warm. If you’re cold, and if you’re in a sickle cell crisis, you’re more likely to then vasoconstrict to the vessels will go narrower and the sickle cells that are blocking those vessels, that’s going to worsen if somebody’s cold.  

That is a summary, if you like, of what ACT NOW is. 

Amanda Cope (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT ) ACT NOW has just really increased the interest and awareness around sickle cell.
We’ve got posters in the corridors on the walls. Parents, families, can go around and see the posters on the walls. Having things like the ACT NOW screensaver, I was in a meeting and had it on and we were waiting for people to join, it encouraged another  consultant to say, ‘Oh, give me the five minute low down on the ACT NOW acronym. Sparking that conversation and, you know, getting people interested really. 

Isabel Adams (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT ) I totally agree. I think raising the profile, makes all the difference in the world. And since the posters have been up, some areas that I’ve been trying to get into are suddenly emailing me and saying, ‘Oh actually, Izzy can you come and do some teaching on our away day?’ and ‘Can you come up to the ward?’  It just sparks more conversation. It’s so much easier to ignite interest when there’s already a bit of a buzz about the hospital. And it’s given us a great insight as to how it’s looked nationally and how we could help other areas that are going to implement it afterwards. 

Amanda Cope (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT ) Yeah definitely. Izzy has been working really hard with our Emergency Department team to raise awareness and implement the acronym. Ask if anyone’s interested in being our sickle cell champions, because they can also help to deliver training or information and just raise that profile.  

Isabel Adams (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT )  It’s so important to find your people who have some interest already in sickle cell in areas. And then encourage other people in different areas to have some interest too. Because it’s the communication and sort of almost creating a community that keeps the information and knowledge going, helps you to keep people updated because things do change. 

The way that we do things changes in some senses in terms of where we’re looking after the patients within the hospital, people need to keep updated about what’s happening. So, if you’ve got that community, that makes that much easier and then with ACT NOW that just helps you to form that community. It empowers them, I guess, because I think there’s nothing worse than having a patient that you know is in pain and not really knowing what to do about it.   

Amanda Cope (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT ) It’s really good to have a tool to be able to give staff, to give them the confidence to know where to start. Even if they’ve not had a lot of experience with patients with sickle cell, because a lot of areas may have very few patients with sickle cell. So, it’s really great to have a national acronym to give nurses and the medical team somewhere to start, and to know systematically how to go through things and what they need to put in place to look after patients. 

BRENNAN, Kathy (NHS ENGLAND – X24)  There’s a whole communication toolkit which has got, you know, the screensavers, the e-mail footers, the backgrounds, and, and we’ve done business cards staff can have this in their pocket and just pull it out and look at it. All of this together with the posters is a comprehensive package that will support any site that wants to implement ACT NOW.

Amanda Cope (BIRMINGHAM WOMEN’S AND CHILDREN’S NHS FT) I think for staff we just really like to raise the profile.  We’re really keen to get people enthusiastic about looking after our patients and really showing that compassion. Izzy and I always talk about how patients may deal with their pain ’cause I think it’s really important when patients are in pain to not expect people to necessarily be rolling about around the bed crying.

We have a lot of patients that may be sat on their phone scrolling and we’ve had reports that staff think, ‘oh, they’re on their phone, they can’t be in pain’. And it’s really important to deliver that message that our patients are trying to do everything they can to distract themselves, that may be one of their ways. I think it’s really important to recognise all the different ways that people may present in pain, and it may not be necessarily how we would think. And that’s what’s really important to communicate with the patients and show them those levels of compassion, that is, you know, part of the acronym. 

Isabel Adams Echoing everything that Amanda has already said, we’re really keen to keep them engaged and to be advocates for our patients. And that is something that I have seen more since the ACT NOW acronym has come out. I’m finding that staff are saying, ‘oh, you taught us’. We’ve done education roll out alongside ACT NOW and they’ve said, well, you taught us that we really needed to do this quite quickly. Really advocating for our patients, which is absolutely fantastic. 

BRENNAN, Kathy (NHS ENGLAND – X24) What’s just so encouraging, is just hearing from Amanda and from Izzy about how it works in practice. And it’s learning from the sites that are doing this. I mean, we’d be lost without our evaluation sites and what we’ve done is carried on learning from each other. And just listening to the feedback and I think both colleagues have said this already, but engaging your communication team is really important. Engaging with the right individuals in the emergency department and across those pathways where patients might be, will be unique from one hospital to another. But just engendering that enthusiasm and having a core team. So you’ve got that core support together and then, you know, utilizing the materials, encourage staff to link to the websites and use the QR code. 

Isabel Adams I would say, at any sort of regional meeting we’ve had, just to echo what you were saying there, Kathy, we are doing little segments. And I think I’ve spoken about ACT NOW more in the last 12 months, more than I’ve spoken about anything else. Just little segments here and there just to make sure that people understand what it is, where it’s come from and how it’s going to help. It’s just so important and hopefully, you know, regions rather than just the assessment centres really have got a good understanding of what’s coming their way really.

Kathy Brennan (NHS ENGLAND – X24) The evaluation with the evaluation sites, we’ve done a pre-launch staff survey looking at staff confidence before ACT NOW was implemented. We’re looking at timely access to pain relief, to analgesia, and we’re going to continue to evaluate the impact of how ACT NOW is working. What can we share across the system in terms of the evaluation piece. The pilot sites will be doing focus groups with staff, but also with patients. 

Dianne Addei (NHSE) Thank you to Amanda, Izzy and Kathy for talking about ACT NOW. It is fantastic to hear how the ACT NOW materials are not only supporting better care, but are also bringing wider awareness around sickle cell crisis. As Amanda and Izzy both highlighted, the materials have helped opening discussions with staff about care and treatment for sickle cell. 

Stephanie George – patient It’s great to see the push for safer care for sickle cell patients.

Dianne Addei (NHSE) All staff can access the ACT NOW materials and use this approach for a rapid and appropriate response to sickle cell crisis. Contact the Health Inequalities Improvement Programme for your materials.

Don’t forget to listen to other podcasts in our sickle cell series.