Welcome to NHS England health inequalities improvement programs sickle-cell podcast series.
Stephanie George – patient
Hi everyone, my name is Stephanie George. I’m on the NHS England patient advisory group.
Dr Dianne Addei – NHS England
I’m Dr Dianne Addei, I’m a consultant in public health medicine and I’m the lead for delivering NHS England quality improvement program for sickle cell services.
Anthony Mason – CEO Sickle Cell Manchester and patient
My name is Anthony Mason. I’m the founder of Sickle Cell Manchester.
Chris Abdulahi – founder TSS and patient
I’m Chris and I have SS, and I’ve lived with the condition my entire life so I’m 13 I was diagnosed at six months. That’s what, 29 and a half years.
Anthony Mason – CEO Sickle Cell Manchester and patient
I’m 54, next month by God’s grace 55. British born, when I was born the experience my parents faced within the English system was quite a daunting one, because at first they thought that my condition was down to incest which was far from the truth. And basically from that, my dad was one of the pioneers that helped to set up the original sickle-cell support group, that was called Manchester Sickle Cell Association.
Chris Abdulahi– founder TSS and patient
I do have [sickle cell] crisis semi-regularly, I just don’t present in the hospital with them. The last one that required hospital, I was in hospital for a month. I thought it was the start of COVID, so it was the start of COVID second wave. It just turned out it was bronchopneumonia. Yeah, so the only two times I’ve had a really, really, severe crisis has been bronchopneumonia related. Which obviously is a crisis of the chest and shortness of breath, so this one was pretty much shortness of breath. And every time I would breathe, I would feel, to put it in the most like visceral sense…imagine being pricked with needles but like 1000 at once in an isolated area that’s in line the way you breathe. Or the way your heartbeats, so lub dub sstttt loads of stabs, lub dub sstttt loads of stabs. So those tend to be isolated in different areas of my body. I might often get it in my arms my chest and my lower back, so towards the base of my spine. That was the most severe I’ve had. The first time I’ve ever had a blood transfusion. I had to have an emergency blood transfusion because my sickle-cell levels were so high. My white blood count was, I think, extremely low at the time as well, so it was confusing for my body. I lost maybe 4 or 5 kg in terms of weight. I was basically bedbound and when I was eventually discharged, I left with sciatica because I had been in bed for so long. I’d lost so much weight my muscles weren’t kind of activated, it was incredibly bad and that was the worst complication of it.
Anthony Mason – CEO Sickle Cell Manchester and patient
Each episode is not necessarily the same. So, there are times in terms of episodes that I have, that start off mild, but you can feel that there’s a buildup and then it when it crescendos… We can’t separate the pain from the mental aspect of this as well. I think that’s something that needs to be taken on board.
So, when you going to the hospital, you’re wondering whether you’re going come back out, that actually adds to depression anxiety and again that can amplify into the pain. The pain to be described for example, there were times I remember having certain pains with my leg and to the point where the pain was excruciating. It felt like a pneumatic drill just continuing in one particular spot, just going for ages but you didn’t know as to when that would subsiden there were points in my life, in all honesty that I would’ve preferred for the leg to be amputated because of how this severity of the pain, because it was draining.
The pain is at times describable sometimes it’s indescribable. You feel there’s a low ebb you can feel that the mind and starts to go into self-defence mechanism in terms of ‘what do I do to try and offset and how do I look at the longevity of what the pain is going to be?’ Because every crisis is different or sometimes the crisis can be a few hours, sometimes it can be a few days or sometimes it can be a few weeks. So, it’s a gear in your mind to what type of episode you’re gonna be facing. So, having that mental preparation as well as the physical, you have to combine them both of them in terms of having to go through the whole process of living with a crisis.
I’d go into the hospital, I need the powerful pain relief. If I took morphine in the hospital, I would need anti-sickness. Then told that I couldn’t have a particular anti-sickness that I was used to. So they would say, well you can have XXX [drug name] and I said well doesn’t work on me. Further from that, when I used to go to the hospital, I used to think that the bedding was dirty, I didn’t realise that the morphine would cause the itching. So, when I was in the hospital, I need the anti-sickness, antihistamine, hydration, So I’m all wired up and such forth and at times, I’d need a catheter as well, and managing all that was a bit of a challenge.
Chris Abdulahi – founder TSS and patient
I’ve not really experienced negative sickle cell treatment or medical access. Because I don’t present in hospital with sickle cell crisis regularly. When I’ve been admitted however, there have been moments where I feel like there’s a lack of care or belief because I am a man that ‘oh my pain tennant should be higher. As a man, I should, just get on and move with it, that sort of thing. It’s not overtly said, but I guess it’s the side comments, or throwaway comments that sit within that realm. So, I believe that’s the first layer problem, that sickle cell patients are treated like they’re almost itching for painkillers.
Anthony Mason – CEO Sickle Cell Manchester and patient
Also got cultural sensitivities as well. If you’re coming from the Caribbean, if you’re coming in from Africa and sometimes the way that you engage within the system and your cultural background has an impact and how you look at the system, and how you address the system. You go in and the doctor says you take the paracetamol, some people take the paracetamol knowing that the paracetamols are not gonna be affective.
[I’ve] always advised that when you’re going to hospital to try, if possible, to have somebody with you, who can take notes and also can help to advocate on your behalf. Navigating the NHS system at times can be a real challenge. In terms of going in, you’re in pain, having to try and explain your pain and your challenges. Lack of oxygen can cause hypoxia so therefore you’re not as compos mentis or you’re not as forth coming as you would be outside of crisis.
Chris – founder TSS and patient
100 per cent. Let’s reduce the amount of additional words and conversation that needs to happen when we present in crisis. I for one know that, when I present in crisis, I’m able to articulate myself pretty fine because I’m able to manage my pain as at a decent level most of the time. But other people, by the time they present to hospital, its already too late. It’s ‘give me medicine, give me painkillers’ now, or I fear the worst can happen and when you’re greeted with medical professionals [who] are gonna be like ‘have you taken paracetamol’, or …. as has been mentioned before you’re gonna take paracetamol, you’re gonna take ibuprofen and suddenly locked out medicine for four hours. And that’s not the solution that’s gonna help me in this immediate moment. There needs to be degree of let’s have a two-way conversation about this and let’s figure out the best way to work on your condition together.
Anthony Mason – CEO Sickle Cell Manchester and patient
I think we need to understand fundamentally is that the system itself needs to be equipped to deal Sickle Cell patients. So, we talk about education from nurses, doctors, registrars.
What needs to be addressed is also the communication digitally, because we’ve got fragmented systems on the national basis that don’t speak with each other. So that’s going to be something that’s crucial in terms of being able to address, because with all due respect, the majority of individuals don’t want to be in hospital. Some people go into different hospitals and if it’s not picked up on the system, you have professionals guessing, and the NHS is going to be spending a lot more money keeping that individual on repeated admissions.
Stephanie George – patient
When those episodes of pain do come, it can be difficult to communicate what we know and what we need with healthcare staff. When you’re in so much pain, or you’re suffering from the effects of hypoxia and you’re really scared, because we’re normally really vulnerable at this point, how can digital care plans improve our care?
Dr Dianne Addei -NHS England
So, the digital care plans. The whole idea of having a digital care plan is to provide a patient with the flexibility of going to any hospital. So, ideally when you go to any hospital, they should be able to know, this is Stephanie she has sickle cell diagnosis, she’s in a crisis and this is how we should manage that crisis, and that is the essence of having a digital care plan. The issue about it being into operable, is just about wherever you are in the country they should be able to access it.
Stephanie George – patient
Thanks Diane, so now over to Thomas And Mary who are going to talk about the universal care plan and how this digital plan is transforming care.
Tomas Ince, Clinical Transformation Lead, London Universal Care Plan
Hello everyone, my name is Thomas and I’m the clinical transformation lead within the
universal care plan program which is based in London. I’m a physiotherapist by background and I’ve been doing the role for a couple of years now.
Mary Emery, London Ambulance Service
Hi, my name is Mary Emery, consultant paramedic with London ambulance service. And a large part of my role is reducing health inequalities within London.
Tomas Ince, NHS London
The universal care plan [UCP] program is an NHS service. It was launched in July 2022. And what the system does, is provide a digital care plan solution that’s accessible to all health and care professionals across London, and it’s also viewable to patients on the NHS app.
If there’s an organisation outside of London that has done the integration to the national record locate service, it means that the UCP is viewable through that service. Currently [the UCP] has two main uses. The first is advanced care planning, and the second as of this year, is sickle cell emergency care planning. And at the end of this year it’s going to be expanded to become a personalised care plan.
So, in London the way that the UCP works for people with sickle cell is the haematologist will work with a patient to create sickle cell care plan. That has a selection of directives in it, so their individual to that person. So should a person with sickle cell goes through a vaso-occlusive crisis, the consultant will put in how that person should be treated. So, what medication they should have in an ambulance setting, in a ward setting, what their preventative care is, and also maybe what their day-to-day care is, and that submitted into the system.
Once it’s submitted, it becomes available to everyone to view, including our colleagues in LAS [London Ambulance Services] so Mary, will hopefully be able to see it when she goes out to see a patient, through her electronic system which is called Cleric and it’s flagged to her.
Mary Emery, London Ambulance Service
Previously, patients might have needed to carry physical copies or paper copies of a plan around with them and you know that the burden of needing to remember that if you’re going out, just shouldn’t be with a patient. Or having to try to articulate the specifics of their care plan, when we know that they’re in excruciating pain. So really, the onus is on us to hold information and access that information and use that to give the patient the best individualised care. So having this available electronically, is so vital for us.
Tomas Ince – UCP
So, we’re all trying to work in partnership to enable patient to get the right treatment at the right time in order to reduce suffering and to improve the care that that we give to those patients.
Mary Emery – London Ambulance
At the time, at which patients contact us via 999, we know that they’ve exhausted their own
medication and they’ve tried to manage the crisis. So again, it’s important for us to understand this, so we know that actually, maybe community management isn’t now the most appropriate level of care.
By knowing the patient’s diagnosis of sickle cell disorder, we can manage other conditions mindfully, to make sure that community-based care is effective. So for example, if that patient has an infection, they might not need to go to hospital, but knowing that they have sickle cell disorder and perhaps some increased risks, that will make sure we manage it effectively, first time at home. Also, it’s important for the health of the patient, but also their well-being of the patient. Going into hospital will have or may have, a negative impact on the patient or their families, particularly if they are providing essential care to children or other members of the family. So, we have all that information, and we can really mindfully make sure that we’re managing the patient appropriately, we can prevent hospital admissions and disruption that will cause to the patient but also to their family.
Mary Emery, London Ambulance Service
It’s been received really positively by our clinicians and our clinicians provide care to
patients over the phone, and on scene face-to-face and what it’s enabled us to do is
to provide individualised care to patients. Whether that’s through specific medicine
administration or identifying the best care facility to transport patient to, or when actually conveying a patient hospital is not within their best interest. And particularly with sickle-cell, it enables us to have sight of a patient specific treatment plan which has been designed by
their specialist and this means we can treat the patient in a way that is effective for them
and take them to their known specialist hospital.
Tomas Ince, NHS London
So, in the universe care plan when you put in a diagnosis sickle cell, the sickle cell
directives appear in the form. And the ACT NOW guidance also appears in the form,
and it also appears within the summary section. It’s available to those people across at
urgent care, A&E, the ward-based settings, so everyone has ACT NOW at the front of their
minds and will understand that this [sickle cell crisis] is a medical emergency that needs to be resolved and managed ASAP.
Mary Emery, London Ambulance Service
So, I think having the ACT NOW messaging within the UCP is such a great way to ensure that all the aspects of care, that we know are important are clearly and easily there for everyone to refer to. This helps clinical teams quickly and effectively start to manage the crisis in a way that we know is beneficial for that individual patient. But it’s also a useful reminder of the other interventions that we know really help, such as keeping a patient warm, or encouraging fluid intake. And it’s really, about keeping those things easily accessible and at the front of the clinician’s minds, to make sure that that the patient experience and the treatment that we provide is as affective as it can be.
Tomas Ince, NHS London
There was an enormous national drive for sickle cell, which was the publication of the ‘No one’s listening report’, which are enabled a channel of funding so that everyone with sickle is expected to have a digital care plan. And in London, we receive some regional funding to enable that happen. As part of that program, we joined up the haemoglobinopathy networks cross London to create a delivery group. That’s how we created the data fields for the platform. And actually the national team at NHS England were a big support, because they insured integrated care boards had a memorandum of understanding on what they need to achieve as part of this programme. So there was a real push nationally, regionally to make this happen.
I suppose we’re still in the early-ish days. It was launched in January for sickle cell and the numbers have been growing throughout the summer. So, we are about 90% [of people have a fully integrated record] now. The UCP took over from coordinate my care so the team that work with the universal care plan had to migrate about 50,000 care plans across from one system to another system which was an enormous task itself. So, there was a lot of work that needed to happen to achieve that. And then in terms of the new system, we were very much led by our users. So, our clinical networks, our urgent care colleagues, our clinicians that are on the ground, to really understand what they wanted in the hope of building something that they can use, endorse and will also sort of share amongst their people.
There are always big tech hurdles with these regional programmes but I think we sort of
try and work through them. I think one of the big challenges is the by-directional
information exchange that for some data fields that we have with EMIS and SystmOne – those are our GP electronic health records providers, because there are always unforeseen consequences when you’re exchanging different types of information.
If we’re trying to increase adoption of the universal care plan, one of the first technical considerations is how your clinical teams can access the universal care plan? So it’s accessible primary through the London care record, through cinema millennium, through EMS, through SystmOne, through a direct integrations and also Cleric and a Gastro which are urgent care services and for those people that might not have access to the London care record, we have provided an independent web portal. Enabling easy access to the platform is one of the main things that we need to consider. We did a lot of research with staff, and they wanted a one login approach, one sign-in approach. So, you actually don’t need to sign in multiple times to get into the UCP. It’s just a widget that exists on your EPR unless you have the independent web portal access.
So, once you sort of a establish technical consideration, integrate with a national solution called National record locator service. So if you have a crisis in Kent, you call an ambulance and that service will be able to see your universal care plan, which is great for a highly mobile population like people with sickle cell. It does require that organisation to do the integration their end [too] and it’s primarily ambulance services outside of London, and mental health organisations that have done this integration.
UCP is in essence, it’s basically like a series of data fields that are grouped together in like-minded forms. We utilise a type of technology which is called open air and what that means, it enables us to edit the form fairly easily. It means that we can add in things like conditional logic and business logic which basically means that instead of making the form longer, longer and longer, we try and make the information specific and relevant to the person.
And when it has been rolling out to team across the large patch, our mantra is the UCP is a digital enabler. It really is for leaders across your patch, or if you are a leader across a patch, to decide the governance about how you wish for this additional enabler to be used and we can really support you to do that. We have our own role-based access controls but you may wish to introduce some additional governance if you wish. And then in terms of supporting staff, again it’s about taking ownership of training. So, we provide resources, training videos, guides on our website, and also there available through the NHS learning hub. So, it was really about incorporating those training elements into your business-as-usual training. It was part of our usual induction processes. And since then, month on month the number of care plans continues to grow. So, there’s about 75,000 care plans in the system at one time. At the moment but quite a few hundreds of thousands have been through it, so it’s exciting.
The UCP is used differently across different care settings and in community-based care. They are firstly used by general practitioners, when they may be having a discussion about a
patient wishes and preferences and how they would like to be cared for. And then it’s also being utilised as part of community at multidisciplinary team meetings, for maybe patients that are going into hospital quite frequently, so that they can have discussions where they
develop care plans for that patient to hopefully avoid unnecessary admissions where possible.
And then the UCP is also being used at the moment, as part of projects looking at
discharge to assess pathways and referral pathways so can the UCP be used as part of a
single point of access or single point of coordination, to help clinicians triage …
so that they can make the best decision about which service to refer that patient to, to
ensure that patient has the right level of support and care at home.
Mary Emery, London Ambulance Service
I think the sickle cell UCP is new, but do you know more broadly, that for some patients,
particularly frail patients, going into hospital and staying in a bed with limited movement can lead to deconditioning. And this means that when they come to make the transition back to living at home, that can become really difficult and they have other complications. And so actually, if we can provide all the care that a patient needs within their own home, we can prevent those issues from happening in the first place. So that’s why having information and knowing how to link in with the other care services, that can help us keep a patient at home safely, is so vital.
Tomas Ince – UCP
I think in terms of what we’re trying to do, I think for staff it’s really about reducing digital duplication. So, ensuring that it’s easy to access, that we allow by-direction information exchange where it’s appropriate or we introduce flagging where it’s appropriate. So, at the top of the screen there might be a flag to say this person has a universal care plan, so it can be easily accessed, and it’s also about hopefully reducing the administrative tasks that clinicians have to do. So, with their patients, they can ask them to enter the information that would be relevant for them, and reducing ministration through integration with the demographics service with technical National events management service with the national record locate service and also something called GP connect.
For patients, it’s really just about improving their outcomes and providing them with choice and allowing them to have more involvement in their care plan. They can work in partnership with their health and social care providers. I do think it’s a really exciting time for digital care planning in sickle cell and for other conditions. There’s a good way forward for the UCP over the next couple of years to demonstrate that care planning has its benefits across lots of different settings.
Mary Emery, London Ambulance Service
We may attend to patients when they are critically ill and they’re not able to articulate or express their wishes. And actually by having spent some time doing their advanced care plan, even when patients are not able to at the time express how they wish to be cared for, we have access and we can provide that really individualised care for the patient. So having that is so useful not only for clinical management of the patient but also respecting any wishes and beliefs.
Tomas Ince – UCP
For the universal care plan we’ve been going through an exciting period of the last couple of years. Working with lots of different groups across London and the clinical network, ICBs, lots of clinical clinicians on the ground to develop a personalised care plan that is blended and also meets the needs of many different user cases. So that you have one care plan for one person. You might have sickle cell, but you also might have another morbidity. You might have sickle cell and diabetes and you don’t want those to be managed separately, you want them to be managed as part of one blended care plan approach. You’re one person, we want to treat people holistically.
The real ambition is to support people as part of a holistic personalised approach within the
community to achieve the aim of lots of different services, so we don’t tell people how to use it. We say this is the digital enabler, this is what it does, these are the benefits of it, could this benefit patient’s in your pathways, and that might be at improving the quality of life, reducing hospital admissions and improving care they may receive at home. So, it’s really up to those services how they wish to use it and then I think the big thing for me, and I think it’s gonna be a game changer, is we are in enabling editable access for patients in the NHS App. So in the future, you will be able to start and edit universal care plan yourself and you’ll be able to enter non-clinical information about yourself, for example, information that is important to you, that you may wish to share in a crisis or you may wish to share with your health and social care professionals. It may be important information about what hobbies you enjoy, what care arrangement you have with your family and friends and that will hopefully improve. That will give clinicians a quicker idea, an improved idea about who you are as a person, so that again you don’t have to repeat your story over and over again. You just … really you put it on UCP.
Mary Emery – London Ambulance
So in London, as part of our five years strategy, we are committed to reducing health inequalities that are experienced across the capital. And we know that there are some stark inequalities for patients who suffer with sickle cell. We commissioned two charity organisations to conduct some patient engagement, so we could understand exactly what we do well as an ambulance service but importantly how we can improve care for patients with sickle cell disorder, and the steps that we can take us an organisation to approve the care. The aim is to give the voice to the patients who are impacted by health inequalities and understand directly from those patients what good care looks like.
We work closely with the organisations, but we know it was important that patients had a safe space to discuss their experiences, and we were really grateful for the insights we gained from almost 100 patients. We are collating that feedback now and designing an action plan to address the recommendations that come directly from patients, so it’s a really exciting time for us to really improve the care that we provide.
What we’ve heard from patients, is at the time that they contact the ambulance service for help, they’ve exhausted their own at home medication and they’ve tried to manage their crisis before turning to us. So it’s important that we understand this. So, we know when community management is no longer possible or when hospital intervention is needed. So, it’s early days but the way I would hope that it impacts on the lives of patients, is that they have excellent access to our care. That the care that we deliver is in line with best practice, in-line with their specialist treatment plans and that we were able to manage them effectively, be that in the community or if unfortunately, hospital is needed for them.
Stephanie – patient
Thank you Thomas and Mary
Dianne Addei
Thanks for sharing lots of advice for systems as they develop their digital care plans.
Thomas – UCP London
I hope that for people who have sickle cell who may be experiencing pain in the community and suffering in the community, they have the reassurance that they have their day-to-day management plan available on their NHS App. That’s been created by their haematologist with them, so that they’re able to go back have a look at that information, maybe act upon it if that’s what they wish to do. The reassurance that if they do cal for an ambulance, that information is available to it’s crew so that they are reassured that the ambulance crew know that this is what the haematologist has said. It’s not just something they’re making up on the spot. It’s something that’s been planned for in advance in the case of this happening.
Stephanie – patient
It gives me the confidence knowing that I can go anywhere in the country and they can access it. I don’t have to keep saying this is what I have here, this is normal. So yeah, that is … it’s actually really, really exciting to know about.
Dianne – NHS England
That’s the essence of having a digital care plan. You know, you might not carry it with you when you’re visiting a friend in Manchester, so you don’t have it, so then nobody has access
to it and people don’t even know that you have a diagnosis. And so that’s the whole sense of it, to make it easier for you to receive the care that you have agreed that you should have when you are in a crisis.
Mary – London Ambulance
I think we know from the inequalities that we’ve seen in terms of life expectancy and the quality of life that patients with sickle cell experience, we can’t underestimate the importance of patients receiving really timely care and affective care.
Chris – founder TSS and patient
These get in get out quickly help centres, acute pain wards. Where you present in pain, you have very specific, very unique, haematology wards, where people can present. It’s straight there; you call or you have discussion first, can be seen on a priority scale and have my pain managed because I can guarantee no one wants to be in hospital. We don’t wanna be in hospital. We don’t like the idea of being there longer than we need to be. No one has an affinity for being in A&E or being on a ward. Sooner we can get our pain management, so we can get out there, so we can get home, I think that’s what all of us would rather do.
Mary – London Ambulance
And in terms of what needs to happen to enable that, I think we understand now the importance of patients receiving care at a specialist centre. That’s important for initial relief of symptoms but also for long-term health outcomes, so we are working with hospitals in London to see if there’s a way to create specialist pathways, whereby our ambulance crews can take patients experiencing a crisis direct to specialist centre. To make sure that they do really receive that care in a timely way and effective way according to their individual care plan. So, if we can have that direct access, bypassing emergency department, then for me that’s that should be the future of excellent care for these patients.
Chris – founder TSS and patient
You know we wanna be able to look after ourselves and have a degree of independence and those moments are allowed to go into the acute wards and have this quick interaction with specialist get your quick medicine treatment and they decide whether we need to be admitted or not, saves a good chunk of the fuss that goes on with sickle cell.
Stephanie – patient
Sickle cell might have common features, but we are all individuals so it’s impact can be very different to each of us.
Chris – founder TSS and patient
From self-person point of view, and my belief, as a guy with sickle cell and of engagement with medical professionals and just navigating life, there’s a degree of this is how a man should be like; a man must be macho; must be strong. You know, all these social kind of labels that are attached to men. And that was the hardest thing to come to terms with. As someone with sickle cell, whose body is naturally fragile, whose body is naturally weakened and immunocompromised, especially compared to many other of my, of my male friends. You know that they’re going gym, they’re lifting weights, they’re doing squats, you know the whole shebang. And I’m … I don’t know if I can do this gym thing too much you know. I can probably do it potentially… but I don’t want to risk anything beyond that,
Antony – Founder Sickle Cell Manchester
Sometimes the pain aspect, I use it for gaining in a sense. How do I work that out? If I’m doing local or home exercises which I believe firmly and that exercising helps for those who’ve got sickle cell. I’m not talking about the Arnold Schwarzenegger going and pressing weights, what I’m talking about, you gotta be doing something. I find when you actually start to do things, press-ups, sit-ups and such and keeping that in the round. But as Chris said, you know when it comes to shut off point. You don’t try and go against your body. You know you may go to gym and you can lift whatever and one particular day, don’t use that as the barometer on the next week, because if that goes in next week… The thing is as wel,l mentally, don’t feel that you’ve let yourself down I agree with Chris it’s about learning and knowing your own body and being able to stick within that and the guidance that your body gives you.
Chris – founder TSS and patient
As a man I never want to feel like I’m unable to do what I want to do. Being able to earn money, to provide, and that applies itself in ways of presenting with pain and how to manage that. Do I deal with it by myself? Do I tell everyone? For many a number of years, whenever I was ill and, had to go to hospital I wouldn’t tell anybody. I just go there myself because I thought like, ‘like you’re in pain and you can’t handle that’. ‘Ah you’ve got your back just take some paracetamol ibuprofen and then go to sleep sort of thing, because I couldn’t do that I wouldn’t tell anybody. I’ll just call myself an Uber, go to A&E get treated, on my way back out of A&E like ‘oh yeah, just went to the doctors to get some painkillers’ and just gloss over it.
Anthony Mason – CEO Sickle Cell Manchester and patient
I think the mental aspect of it, is something that needs to be looked at. I think maybe as an aspect of these podcasts. Looking at how carers look at the situation, how they cope. Because they are left every time a loved one’s go into hospital. How they cope in terms of looking at the situation. Their thoughts.
Chris – founder TSS and patient
Living with this condition has been an interesting battle, socially, just general life. Which, and because of this, has led me for my own charity able organisation called The Sound of Sickle or TSS. To create a sound around sickle cell, to get a conversation started, mainly with the intention of educating the community, within ethnic minorities. We have a community group chat, I think there’s about 78+ people in the community of sickle cell. And we discuss our condition and react. We talk about hospital admissions, talk about things that have happened in similar veins as well as specific sickle cell issue or something new. We are talking to get to know each other and build quite an almost familial type bond, and a bond of resilience. And in terms of what we do outside the group chat, we do some events and educational pieces, some talks at other events where we talk about sickle cell.
Anthony Mason – CEO Sickle Cell Manchester and patient
Sickle Cell Care Manchester. My dad was one of the pioneers that helped set up the original support group, called Manchester Sickle Cell Association. That was running for about 30 years, and then we took on the mantle of re-shaping it and taking it forward as of recent years. We established ourselves as a support group in 2011, became an official charity in 2015. In fact, next year we celebrate 10 years of being a charity. Our core aims are to advocate on behalf of those living with the condition, to bring education. We do events within the community, we do education within the schools. [On] our website, we employed somebody who works within the DWP to do an A to Z of filling out the PIP [Personal Independent Payment] forms to accommodate for individuals who were struggling in the area. And from that point we go to the tribunals. We do befriending service which we are redeveloping, because what we recognised throughout COVID, that many of our volunteers either have health conditions themselves or sickle cell, so we’ve had to reconfigure that to accommodate and adjust with this system.
Dianne – NHS England
Thank you Chris and Anthony for sharing your personal experience of living with sickle cell, alongside Stephanie. Your experiences and insights from supporting others with sickle cell really supports the case for digital care plans.
NHS England has supported systems in London and Greater Manchester to develop interoperable platforms to carry digital care plans for patients. We are ultimately working to make sure all 17,000 adults and children living with sickle cell should have an accessible digital care plan to support better personalisation of their care.
And thanks to Mary and Tomas for sharing lots of advice for systems as they prepare their digital care plans.
Don’t forget to listen to the other podcasts in our series.
Good bye.
Stephanie – patient
I’m going to end this podcast instalment. Thank you to Thomas and Mary, Chris and Antony.