Wild Card - Whose Shoes?

23. Angela Cornwall - Speedy Boarding. The passport to top health care

• Gill Phillips @WhoseShoes

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Today I'm talking to Angela Cornwall, with thanks to Carol Munt (Episode 7) for introducing us!

Angela uses her experience as a family carer to make great things happen. She designed a ‘passport to care’ to make sure clinicians have exactly the information they need to deal with a rare condition, such as Diamond Blackfam anaemia which Angela’s daughter has.

I love it when people  come up with simple ideas that would be useful for other families. But they often find it difficult to get their solutions adopted -
Angela's 'Speedy boarding' makes  sense!

Angela is practical and proactive and, like Carol, full of common sense and wanting care to be the best it can be AND cost effective.

Lemon lightbulbs (lots!) 🍋💡🍋

  • With rare conditions, patients and family carers are taught by expert clinicians. Don’t underestimate them or dismiss them as ‘anxious’
  • If you have a rare condition or specialised needs, a ‘passport of care’ is a great way to record your needs so there is no confusion or time wasted: Speedy Boarding!
  • Pathways and protocols are often inflexible. “We don’t do transfusions at the weekends” can be dangerous
  • Family carers are very experienced! They care for the person 24/7 and learn what is required. Listen to them
  • Give patients and family carers the training they require to manage their own conditions and minimise  hospital stays
  • Personalised care  is not only good for the patient but can be highly cost-effective for the NHS and more rewarding for staff. Try it. Some great examples here!
  • Collaboration is key and can remove the trauma!
  • Don’t overcomplicate things - simply listen and respect the expertise of patients and family carers. Be open to simple solutions.
  • Examples – a clinical passport of care, invented by a family carer after having to save her daughter‘s life when the protocol was inflexible, or practical ways to avoid sensory overload and meltdowns
  • It can be a sign of strength, not weakness, for clinicians to say they don’t know
  • You can’t be expected to know everything about rare conditions, but the person with the condition and their family know all about it!
  • Peer support is key! Check out DBA UK charity for Diamond Blackman Anaemia
  • Help children with complex medical needs have normal experiences – rafting, kayaking and marshmallows around the bonfire!
  • Environment matters! What a great idea to design a children’s hospital with glass walls so children can see out, stay connected to the real world and heal!
  • Fresh air, going outdoors, having fun - helps speedy discharge!
  • Building the confidence of patients/ family carers - help them feel in control and able to manage medical needs
  • Holistic therapies - good for everybody!
  • People with autism can find it very hard to access healthcare. Design care to make it possible for them to have a good experience.
  • A reminder to respect and value the expertise and dedication of family carers!

Who can help Angela spread her ‘passport to care’ to more  families who would benefit?

Further resources:
Speedy Boarding passport to care
Support and benef

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Gill Phillips  00:11

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

 

Gill Phillips  00:46

Today I'm talking to Angela Cornwall. She was introduced to me by Carol Munt, my podcast guest in episode seven. Carol knows exactly what I'm trying to achieve in this podcast series, and she said I must talk to Angela. I'm so glad she introduced us, as Angela is another Wild Card, using her experience as a family carer, to make great things happen. To come up with ideas that would be really helpful to other families. But as is so common, finding it difficult to get her solutions adopted to benefit as many people as possible. We will definitely talk about 'speedy boarding'. It makes so much sense. Angela brings a wealth of experience, is very practical and proactive and, like Carol, full of common sense and wanting care to be the best it can be and cost effective. I know Angela has also got some really interesting changes going on in her life and some amazing plans for the future. I'm looking forward to getting to know her more today. So welcome, Angela. Can you tell us a bit about yourself, and what's important to you?

 

Angela Cornwall  01:57

Oh, hi, good morning. My name is Angela Cornwall and I've been a carer for 35 years for my daughter who has a long term condition called Diamond Blackfan Anaemia. My daughter has to have transfusions every month. She's had them from the age of one, and she will do to the end of life. Natalie also has other complications with her health. She has cardiomyopathy with arrhythmia, and she also has an ICD fitted. Through caring for my daughter, you can imagine the amount of wealth of information and learning and stuff that I've done within 35 years of caring for her, the challenges that we've also face as being a parent carer. Natalie has multiple conditions, which makes it very challenging for everybody, not just myselfand but Natalie, but for everybody, the clinicians and every one that kind of crosses Natalie's path within her care. So I decided to design a 'passport of care' due to the challenges and the accessibility and the time wasting and the stress and the anxiety and the cost and effectiveness within the NHS of the way that care was being delivered. I then kind of designed a passport, a strategy of care for my daughter because what we were finding was that we were accessing care and protocols were in the way and when protocols are in the way for example, what I mean by this is, one time Natalie's blood count can go from 12 to 7 within 24 hours. So her haemoglobin drops very quickly. This means that she needs a transfusion, and it becomes life threatening because all it does is drop. That is part of her condition. We was told one time we don't transfuse on a weekend. So you could imagine my anxiety that came with 'we don't transfuse' because that was the protocol. We don't transfuse and I said well if you don't transfuse this young lady by the weekend you're going to have a different, you know, it's going to be a different ballgame altogether. So with all my knowledge and stuff of looking after Natalie, through being a young person, to now adult services, and now Natalie's independently looking after herself, but for all my experience in kind of involvement engagement, I was very much a very proactive mum. I was very engaged in Natalie's treatment. I was always asking questions, and we wanted to know and we were very engaged in Natalie's condition. So much so at Alderhey we were the first to do portacaths at home. My biggest concern was my daughter will be under the NHS for all of her life, from the day she's born to the day she dies. How much time do we need to be spending here, you know, I was very scared of her being institutionalised and obviously spending more time in hospital than, than she did, you know, having a normal life. So we kind of engaged with our services to, you know, do portacaths at home Alderhey trained me, I was very keen as a mum to do as much as I can, for Natalie. And I wanted to learn, I was very keen to learn about her condition. She had portacath fitted, due to being transfusion dependent, and obviously Alderhey  trained me to, to do the portacath, which was, you know, absolutely for me as a parent, that was just brilliant, because we didn't have to spend that time in hospital. Because if Natalie spent time in hospital as a young, as a young person, obviously, I had to. You know, I found by being involved and engaged in Natalie's care, I found that we had more control and we could work together with the health team as well. So, which was really important for us, because we wanted to learn everything and we wanted to know everything about her condition. Also, what consultants never knew and practitioners never knew, you know, we also helped them as well to understand her condition. Because when Natalie was diagnosed, she was diagnosed with an orphan disease, meaning it stands alone. You know, I was given a piece of paper, which only a consultant doctor could read. And that was my only information I was ever given. Because there was nothing, nothing at all, about, you know, about Diamond Blackfan anaemia. The only report on it was a clinical report, which only when the consultant, it was actually a professor that gave it to me and said, Angela, you will not understand this, because, you know, it's clinical and I just said give it to me, I will try. And, you know, it literally was trying to look at a completely different language, it really was. But I was grateful for that. Because for me, that was really important. That was the only information I ever had. And if I had to hand that to another consultant, then he would understand it. So it was a really good link for me, even though I didn't understand it. So, for being a carer for Natalie, for 35 years, you know, we face a lot of challenges. You know, I was a hands on mum. I cared for my young baby, I cared for my young adult. And obviously now Natalie's, she's living independently, so I don't need to do that now. But we face a really lot of challenges. At two points, Natalie nearly lost her life, she went into cardiac arrest, I had to do CPR to keep my child alive. And that was at home. And, you know, we really did have some challenges. And I, you know, I think one thing that I would like to say is that, don't look at that anxious mum, as an anxious mum, you know, the anxious mum is anxious simply because she knows she's educated enough. You know, when you are looking after your family with long term conditions, you are taught by the experts. You are taught by the experts.

 

Gill Phillips  08:38

As you're talking, I can see how those different experiences led you to come up with a passport of care and having that clinical information that perhaps didn't make total sense to you, but would work for somebody else, to get it straight to them to bring in your personal experiences, your knowledge of Natalie and the condition and so on. So tell us about the the passport and what your dream would be for that.

 

Angela Cornwall  09:04

So my vision for the passport is it's, it's tough. Being a mum, being a mum caring for a young baby, adult. It's challenging, it's challenging, it's tough. We just want just to go into any health care and access a service that is quality effective for the patient, cost effective for the NHS, and a simple system. We don't want to go and wait in A&E because we don't need to wait there eight hours in A&E. Because if you look at our strategy of our pathway of care, we can show you well if you just do this, and you just do this, and you just do this, and you just do that. Every person's care. You know, I have a saying, one coat doesn't fit all. So look at the need for the person that you're dealing with, you know, look at their needs, look at what is going to make it effective. No one wants to be an A&E longer than they need to, no one wants to be on a ward. My daughter now collectively collaborates with her team and her team collaborating collectively work together. From the minute she goes in to have her treatment, to the minute that she's finishing, it's effective. There's no time wasting, and there's no money wasted. There's no life at risk. It is effective. It works. And it's just in and it's just out. So the reason for me for the passport why it was so important was because they were the challenges that we were up against, and also respecting the NHS. I had a massive issue with the money that was wasted. I could not believe it. It was ching ching, ching, ching, ching, and the quality affected my daughter's life, was affected by that time wasted. Because that meant that she had to spend more time unnecessary, in a place where she, we struggled to get her there in the first place. So you know, it's with young people ,as adults she's fine, but as young people, it's very difficult to when you are part of your management of managing a condition long term, is to make sure that it is effective, because mentally it's hard enough for anyone dealing with a long term condition. So let's not make it harder. Let's make it easier. Let's make it a pleasure, as much as you can say a pleasure, rather than trauma. Let's take the trauma out of things going wrong, you know, waiting in places for hours. Why do we need to be in a hospital? I remember one time, I couldn't understand why we had a week in hospital. Appointment on Monday, appointment on Tuesday, appointment on Wednesday, appointment on Thursday. And I'm like we're here on Monday. Can we spend the day here? Can you get the ENT people? Can we get the haematology? Can we get the heart people? Can we just make it ONE day, and we started pushing for that and Alderhey worked with us. I've been using passports for the last five, six years, maybe more. And we've always worked collectively with our team. Our team respect our knowledge of the condition. I respect them as clinicians, and we totally have a effective system that works for us. Because if I did not have that system, I think I would have folded myself as being a parent carer. So the passport for me, and for Natalie was immensely needed. Because it was just sad to see time, money, quality of life, you know, being affected by something that was just so simple.

 

Gill Phillips  13:13

Yeah, this is amazing, Angela, and the face that's going through my mind. And it links back to a podcast that I did with Rachael Grimaldi, who invented CardMedic. And very similar in a way in terms of something that you think well, this is so simple that surely somebody must have thought of it beforehand. Then the phrase I came ... the phrase I came up with Rachel was simply brilliant. Now, that's what I'm hearing here that it's simple. And I love simple things. And it's brilliant because it meets all those different objectives. And I'm thinking, Well, hang on a minute, nobody wants to wait in A&E. But then in this case, each minute that passes, each hour that passes, it's dangerous, you can see that you know what needs to happen. And also you've got a young person or now a young adult. And in terms of what it means to them, none of us want to wait in A&E but for some people, it's particularly difficult or impossible, and making everything, everything worse. So I'm really intrigued by the passport and I'm sure the listeners are as well. So what would the passport look like? I come to hospital and I've got this document. 

 

Angela Cornwall  14:25

Yes.

 

Gill Phillips  14:25

Just talk us through that.

 

Angela Cornwall  14:27

So the document basically will just be a passport identifying the patient. They have all the normal numbers, you know the NHS number, and then it will have a strategy of care. So for example, Natalie's one is clinical, Joel's one, because he's autistic and LD, his one is a bit different. So the clinical one is ... so Natalie goes into hospital, and if she's got to go into A&E, hi, my name is Natalie. Then it has all her details that she needs. Then it also has the team that look after Natalie. So it has her cardiologist, it has her hematologist. It has everybody that looks after Natalie, there's their point of call. If you're not sure, as a consultant, you refer, you refer to, to this number here,.You refer, and you speak to the haematology team, because they know Natalie. But also, if you engage with Natalie, Natalie knows her condition too. So please respect the fact that she actually knows her condition as well. So collectively working together with that team, communication, and that passport will put you on a pathway where it will tell you. So she'll call her haematology team. She'll say right OK I'm due for a crossmatch. They say right Nat come in. She'll go in for a crossmatch. Then they'll crossmatch, and they'll say right transfusion the next day, depending on her Hb. So the pathway just identifies the clinical need, and it puts everybody in contact with who needs to be contacted. So if a consultant is not sure, then he can phone the haematology, he can phone the consultant for the heart, you know, depending on whatever their clinical need is. So it basically is an easy strategy just to go through any system, because protocols don't suit everybody.

 

Gill Phillips  16:23

Things like “we don't do transfusions at the weekend”. That is not a patient-centered protocol /pathway.

 

Angela Cornwall  16:30

Yeah. Especially when Natalie's condition is so rare. And I'm like, Have you ever heard of Diamond Blackfan Anaemia? No, I've never heard of it. Okay, so you've never heard of it. So at that point, that pathway would have been perfect. And this is why it's designed. Because you need to know, you need to know what Diamond Blackfan anemia is, and you need to know what to do. So for us the passport was, you need to know it, and you need to know what to do. If you're not sure of it, then we'll teach you. We’ll show you, we'll put you in contact with people that know the condition very well. We know it very well. We're collectively work together as a team. So there's no mistakes made.

 

Gill Phillips  17:09

And I would imagine that with very rare conditions fora  clinician to say I don't know, is a sign of strength, because they couldn't possibly know all about everything., Rather than assume that they know things and then do something which could be very dangerous.

 

Angela Cornwall  17:24

And then at that point, because when Natalie was younger, I started a charity called DBA. UK. And it got everyone together to communicate and speak together and support each other through the journey. Because one thing that we did identify with Natalie's condition, it was a serious condition. And it was a bone marrow defect, you know, she doesn't make red blood cells from the bone marrow. And back in the days when she was younger, the only option we had was a bone marrow transplant. But we refused that one. So it was a serious condition. So we also had to communicate with everybody. And putting everyone in contact it spread the knowledge, I respected a consultant that stood in front of me and said, Well, I've never heard of a DBA. And I'm like, Okay, well, here's a link. If you're interested and you want to learn about it. Then there we go. There's the experts, learn about Diamond Blackfan anemia, because you will meet these young people, they are going to be in your health care, at some point they are going to be and now I think there's quite a lot. Now, I'm not sure I'm not looked at the numbers on how many diamond Blackfan anemia. But on the support group that we initiated it. There. I think there was about 250 in the UK. So which was a fair, good amount. But also that was really important for information like the NHS, it was important for doctors to tap into and understand about the condition and make links with doctors that specialized in it as well. So yeah, yeah. 

 

Gill Phillips  18:59

And you're just mentioning in passing, setting up support groups, that must have helped so many others because it can be very isolating can’t it, to have something that's really unusual and to come together with other people who really understand.

 

Angela Cornwall  19:13

It was really important for me, because I'm a talker. And I think collectively people work together. It's easier. And I suppose had this vision for just pulling a group of people together. We were just 4 parents, 4 children who had the same condition. And then after six months DBA UK was born. We wrote up a constitution. We got it into a charity status. And I think now there must be about 400 or 500 families on their books. So my vision for that was also for the children because it was really tough. It was really tough having a transfusion every month and typically and I identified that. And I thought, wow, it's a tough thing for a baby to have a transfusion. Yeah. And I thought, we need to bring everyone together, we need to kind of unite with this and talk about it and support each other and let the kids forget about having a transfusion. And that's why we chose the PGL center in Lincolnshire, because it has activities, kayaking, and they was doing the stuff that, you know, these kids spend a lot of time in hospital and that just be normal for the day. Let's do some rafting and kayaking and sit around a bonfire and get some marshmallows because these kids spent so much time in hospital being transfused and prodded. And, you know, because there's other complications, there's, it's a long journey, it's a long clinical journey. So it was really important. So that was my vision, mainly for the children to relate with another child that had the condition and understand that you're not the only one there really. And it was also good for the parents. Yeah. It was really nice to meet other parents and give them some hope. That things are changing, we're all pushing for change, we want things to change. And Natalie is  35, you know, and it's given other people hope that is bad as it sounds, life's does still go on.

 

Gill Phillips  21:25

Because it's all about quality of life, isn't it. And I think the way that you've described can hear a phrase like my child's got a rare condition. But thank you for sharing that, Angela, because I think for people to hear what that means for the child to have a monthly blood transfusion or whatever it might be. And they're just children, they’re children who want to live the lives that other children, so to be able to bring that normality to them, and bring them together with other children who really understand is such a wonderful thing to have done. And the other thing, we've talked about Alder Hey in passing, yeah, and I know, when we had a chat beforehand, I was really kind of got those goosebumps around the work that you've done at Alder Hey, because I'm proud of the work that we've done with Alder Hey around Whose Shoes and true coproduction and leading ultimately to a new neonatal unit. And so I've been to Alder Hey I've been with Helen Calvert, the mum who introduced us and Joanne Minford, the wonderful paediatric surgeon that I was working with who's just been transformational. But you were involved in the actual design of Alder Hey. And I remember the story you told me about, why would you design it with four walls? Tell us a bit about that.

 

Angela Cornwall  22:39

So I was at an appointment with my daughter, and you know, as you do very vocal positively, the best I could be. And we were looking for a consultant who was for my son. And then this lady passed me she said I'm so sorry. She said, I've overheard your conversation and, and stuff like that. And she said, I totally agree with what you're saying, we have the same issue. So then my son got an appointment. And then I got a phone call. She said, I really hope that you don't mind me contacting you, but the chief exec … the points that you were raising when we were communicating, and were really important, and we'd like to invite you to the 10 year strategy build for Alder Hey So she said you we'd like to invite you the chief execwould actually like to invite you. How …, you know, would you like to attend? So I was like, Yeah, that's fine. Brilliant. So off I went. And I'm a practitioner by trade, because part of my programme for myself was to educate, educate, educate while I was caring because it was my normality. And I went into the boardroom, sat with, chief executives, directors. I think there was another two parents there as well. They also got invited and we shared our views around the board table what we thought as parent carers, we've been an Alder Hey day for a long time. And you know, obviously we would be there for a long time. And as a practitioner, I believe that I sat with Natalie in all of her times when she went to surgery from a cleft palate and from when she had an IV porta calf and picc lines fitted I spent a lot of time with Natalie, all the time she spent in hospital so did I and fabulous obviously the work they do is absolutely just life saving and amazing work they do, but your environment is everything. And the four walls was just not…  it was it was just not right. It just didn't feel right. So when they were doing the new build for Alder Hey what I explained was that, you know, visually a child will he'll know if they see things if you're In just like a surrounding four walls, you know you're healing process you're … your mind is not going to be active, you're not going to be looking at things. And for me, the vision was was to bring the park into the hospital, because it was just a ward. And it was very gloomy. It was just clinical, it was just medical, it was just the nurses. But it was also my vision for it was to bring in the outside world a little bit into the wards for the children. Because as a practitioner, holistic practitioner, visualization is really important as part of the healing, it's part of your well being. And that was not in the ward. So by bringing the park and making the front of the hospital glass, the children could sit on the ward, and look outside and see the real world moving. Because it's almost felt like the segregation from the real world and  a ward. And I thought part of healing, let them see the real world let them see the lady coming with her two dogs every morning at nine o'clock. You know, and and the builder walking across the park with his hat on going to work and all the cars and the kids going into school. That was real, that was the real world, you know, it took out the segregation from being well. And I believe that by adding that to the ward, it would be happier. And if they're happier, they're going to heal quicker. So initially, you won't have bed blocking, you won't have sick children being in places longer than they need to. Let's get them healed and out as make it a happy experience. It doesn't have to be doom and gloom, it doesn't have to be sad. Let's just make the two worlds meet an, you know, and open the front hospital up, bring the outside in.

 

Gill Phillips  27:05

So that's another simply brilliant idea, isn't it? How simple just to be able to see life. And it reminds me I think a podcast you might enjoy Angelo, I did one with Joan Pons. Laplana, who tweets as @roaringnurse, which gives you a clue about what he's about. And a part of his story was literally … and obviously taking a risk in terms of his job to some extent and what you're allowed to do to rearrange ITU so that a young man could see out of the window, because that's what he'd said mattered to him. Yeah. And he said that as soon as that happened, that the the guy started to heal in a way that was not anticipated. So powerful.

 

Angela Cornwall  27:46

Totally, and I and I'm glad I took them actions with my daughter, because that's the way that we done it. Because I used to take her out even with a transfusion, I was taught how to, she had an IV transfusion that would last for … first unit of blood lasts for about three hours. So we'd go for a walk because I was trained, I had to be trained to lock off the transfusion. But we were allowed to go for a walk because that was that's what was important to us to keep engaged. Just wanted to take the institution away from health care, it needed to be a better journey, because I just felt that as a parent that needed to be done. You know, Natalie would often stand on the back of her IV transfusion. When Natalie was transfused, it was the IV with the little wheels and you'd wheel it down and I’d stand her on the back. And, you know, we'd have fun with that, you know, not everyone was pleased about that. But I was trying on the ward to identify if anything was going wrong, you know, so I knew how to … the reason why I asked them to train me is because Natalie was getting very bored in one place. So her behavior was starting to change, her mood was starting to change. I need to take this child off the ward, and I need to be moving somewhere. Just, can we go to the shop, you know, in the hospital, let's just … can we just move with people. So show me what to do. What's the safest way I can do this. I need to do this. And they taught me how to manage that. And we would often go to the shop. She would stand on the back of her IV machine - she’d stand on the back. And it became a game, it was fun. It was fun days. It wasn't traumatic. It wasn't a sad experience. We created fun with what we had. And they were the good old days.

 

Gill Phillips  29:49

And as any bored child would, you know, if they're bored, they're going to play up whereas if they're having fun, being wheeled along with mummy and having a laugh then it is so positive All around, and it links Angela, again with another podcast you might enjoy the one we've done around family integrated care. And that's with Nadia Leake and Rachel Collum and they’re two mums. And they're talking about exactly what you're saying you know being trained with medical procedures right from the beginning. So that you can be a proper mummy, proper parents, to your child and feel confident and taking that possibly premature or sick baby back home after the neonatal experience. And being able to be to feel like you're the mummy rather than the theoretical mummy of this hospital child, it very powerful.

 

Angela Cornwall  30:40

Yeah, I was very engaged in Natalie's condition, because I just needed to be engaged in it, I needed to know where we were going, I needed to manage it, I needed to support Natalie, Natalie would then want to learn about it. And she now lives very independently on her own in her own apartment. And yes, she has little ups and downs, no complications. But considering we were told she'd never make it past five, and that was 30 years ago. And well, what was very important for us as well was a consultant actually explained this to us the other day, he says, when Natalie was younger, it was really important - I said, there's two ways we can do this. Now either your condition controls your you or you control and your manage your condition. And that is what I taught Natalie, from a very, very young age. And her consultant stood in front of us. And he said, clinically, Natalie should not be here. He said, and we've been baffled as to why she's still here. He said, and the only conclusion that we all saw, is the power of how she thinks. Yeah, and so this was living proof that having fun with her care and treatment was really important. And keeping it real as possible is so so important, you know, not taking away the reality of the normal world, you know, sometimes people can get bogged down with the clinical and then it becomes quite, it can be a sad time, or it can be a happy time. You know, it's really important which way you are looking at, and this is why, for us effective care that works is important. It's important for the patient is important for the carer, it is important for the NHS, the NHS is the cost, the carer, my mental stability is very important to take care of my child. If I'm not well, then I can't take care of my child, my child's quality of life is vital. So it's an all winner, you can't lose. It's an all win.

 

Gill Phillips  32:44

Well, I'm loving this conversation because having fun, and not just for children, for all of us, people at work, is a big part of what I do. And in terms of firing people up to think that it doesn't all have to be difficult, pathways and procedures. It's about just seeing the human side of things, and firing people up to think that they can make a difference, just as you're doing. I mean, you know, I think you've understated your story. And you know very well, that obviously it was Natalie's thinking but it was having a mum like you who didn't take no for an answer and who didn't just roll over when they said your child won't live past five. And it's a fantastic thing that parents are people who love their children, who get labeled as if you like family carers, but it's the love obviously of your child, the children that shines through, but it comes at a cost and everything that the NHS can do to work with you and support that and recognize that and keep you well and having your own life as well, rather than just be totally consumed by the carer role. It’s how to tease out that isn't it and all work together for quality of life for everybody.

 

Angela Cornwall  33:59

I think that's why my outlet was to study. So I was doing holistic therapy. So the nurses were absolutely made up because my training days they would all be getting treatments. You know, when all the kids were asleep and we'd be on the wards as moms I'll be right that's it. You know, I'm doing therapies. Who wants one? It really,. It really did work. But one thing I will say I mean for Natalie's one, was really important because there was a clinical need but my son is autistic and he's Asperger’s autistic and, you know for mental health, also the passport was really vital is where speedy boarding came as well, because I was working in mental health services young adults, young children, and I could not believe how hard it was to access their health care. It was absolutely, my jaw hit the floor. Because I thought wow If this child does not have a pathway, the child cannot access its health care, simply due to the autism, the sensory overload. It is so difficult for patients’ clinical or mental health. And these passports are vital for accessibility and quality.

 

Gill Phillips  35:27

And I think you were talking about children, was it in a residential setting?

 

Angela Cornwall  35:31

I think it was challenging. So for young adults who have severe challenging behaviors, severe meltdowns, they can go from two staff members to four in 0.0 seconds. And it was finding a way of .. I was asked to take a young person to hospital and because he had not been successful, and I was like, right, okay, I understood autism because at that time, my son was 21. Second year in university, just diagnosed with autism, Asperger's, ADHD, dyslexia, dyspraxia, and I kind of understood that anyway. And I kind of see the challenges I was asked to take this young person to hospital, because obviously due to the behaviors and and stuff like that, it was not easy to access. And because of my knowledge of autism, Aspergers, and mental health, as well, because obviously, a lot of my qualifications now are around that, I understood what was needed to do. So for him, the waiting room was not an option, not an option at all. You had to worry about safety of others, staff, us, anyone else who's around, because if that young person went into a complete meltdown, then it would be aggression, it would be violence, because obviously, just due to the anxiety and stuff like that. So what we found was, I designed the passport around, it was a sensory, sensory, so we identified what was going wrong, looked at what was going wrong. And we rectified that. So the issue was, obviously was around sitting in a waiting room. We can't sit in a waiting room, the noise, smell the amount of people activity for this person, it was not an option. So I said, Right, okay, because, at one point Natalie couldn't sit in long waiting rooms. And we had a bout of that for a very long time where it just wasn't working. So I said, Can we come at the end of clinic? Because it's easier, we just come in through the door, see the consultant, and then we go. So I kind of use that same method, where we say “the last two patients, can we be one of them last two patients?”. When we went into the appointment, we need someone who understands about autism, because I have a autistic person here. And we have to get it right. There's no room for error. If we don't get this, right, we have a sensory overload, we have an overload, and then behavior will change. And then we're in trouble. We need to exit the building. So we need to get it right, right from the minute we walk through that door. So what I requested while I knew the team at Alder Hey anyway, because obviously my engagement with Natalie. So we worked with the learning disability nurses, and we said, Right, we're coming in, so we'd had a consultation the day before. We're coming in tomorrow, this is the time she will meet us at the door, go to the door. And then we'd go into see the consultant. So rather than sitting in, we had a sensory room where it was just sensory based. So while we were waiting that 5-10 minutes, we had a sensory room which controlled the behavior, and also identified the need for that young person. Because obviously, that was what was needed. And it also kept the young person safe. And it also kept other people safe. And it was the first time in a very long time that that young person actually had any medical attention, because it was always a challenge. You know, it was always a big, big challenge because everyone was always worried about behaviors and the risks and stuff like that. So when we actually got a heart scan yet again, it turned into play. It turned into excitement, it turns into Wow, look at what this machine does. It was engagement with that young person and looking at you know, wow, look at this As you know, how amazing is this machine, it can look at your heart, look at your heart beating, and it was involving that person with their care. And yet again, back to collectively working together, involving the person with their own care. And the fascination was there. So we had a gap. But at that point, we had that gap time to get that trick, get that get in, what we needed to get in was the ECG. And it was done for fine, you know, and it then became a great experience. It wasn't complete meltdown, complete bad behavior, it was something that that young person … and I said, all you need to do is engage him in his care. If he understands what is going on. And he's safe, and he feels safe around his environment, you won't have no problems. And that's exactly what we've done. And that pathway was effective. It worked. And, well, I think we attended maybe four appointments, when it was a complete disaster. And my son's autistic as well. And it's so important, there's nothing worse than, you know, and this is what I was doing some work with my local GP surgery. And I was saying, because I have Joel my son, Joel is autistic. So he had an appointment, and then he's called me and he's just put the phone down, because he's like, Mum, I can’t deal with it. And I'm like, right, okay, and what's your problems? You know, and he said, the doctors just not understanding. I said, Okay, fine. So I requested my GPS, if someone is on hand, had autism awareness, so they are  aware, you know, it's so important that awareness goes in, the doctors need to be understanding that autistic are uniquely different people. And they need to be respected for that, rather looked at different and not everyone understands. That way. You know, sometimes you have to change your way to make care work more effectively. And if that person has that need, like for my son, if you explain too much to him,there is too much information. You know, if you just say, Joel , go to the doctor's pick up the form, and get a blood test. 10 o'clock. That's it. So it's understanding. So I was asking for people to be educated around this, you know, and because that's the first point of call, isn't it? When you walk into any GP, doctor's surgery, hospital, if you've got no one that doesn't know about autism and mental health, then you're going to be in the protocol, which probably is not going to work.

 

Gill Phillips  42:58

So I think, in the last 10 minutes … people talk about personalised care. And I think in the last 10 minutes, you've probably given a masterclass what it actually means, you know, like, in terms of preparing the appointment, you know, something really simple, like, the last appointment of the day, someone's gonna get it, so why not the person who actually needs it?

 

Angela Cornwall  43:21

Yeah, because I just feel that, you know, a lot of trauma, you know, hospital shouldn't be about trauma, but it shouldn't be that mentally stays with them, young people, it's gotta change is gotta be it's gotta change … a positive, happy experience. Because the effect from that psychologically has got to be a lot better. Why should hospital be the place that you want to run from, you should initially want to go there because you understand what's happening. And I just feel that it shouldn't be a negative experience. It shouldn't be a bad thing ,it should be effective for everyone, you know, patients, NHS, whoever it needs to be, the staff.

 

Gill Phillips  44:07

Families.  Yeah, I had the other side of the coin with my mum when she was early 90s, poor mobility at the time and needed a lot of help and being offered a, you know, sent a hospital appointment at 8.20am or whatever it is in the morning, you know, it's just not gonna happen. Yeah, just not gonna happen. And the level of preparation and anxiety and parking and goodness knows what, that will go around that. So I think the phrase is, it's not rocket science, is it?

 

Angela Cornwall  44:37

And yeah, yeah, it's not rocket science. And I think when you calculate the waste, whether it be time, effort, money, the calculation of that is a massive, you know, it's absolutely massive. And if people were to go back to the drawing board and look at that, …hospital should be “okay. I'm not feeling very well today, I identified that I do need to go there or medical clinicians identified I need to go there. So I will go there”. It should only be used for the purpose it's built, you know, it shouldn't be used for any other thing other than the purpose that is built for, you know, that’s how I see it.

 

Gill Phillips  45:23

So what a conversation.

 

Angela Cornwall  45:26

Yeah. And I also think that, like carers, I think we should be recognized for what we do , the input that we have, the knowledge because what the NHS has to understand is that you trained us, for the mothers and the fathers and the carers, the caregivers, who look after sick adults and choose to take that role in their life. They need to respect that they trained us, you know, they trained us so they have to respect our words. Our knowledge is not from Google or textbook, our knowledge is from what we've been taught by standing with possibly some of the best clinicians in the in country, in the world, you know, and that information is come back to us and I think the NHS need to identify that that there are some families who are very proactive in looking after their sick family members, and they're very knowledgeable, we need to have that respect because it's not just being that mum, you know, or dad or caregiver,it  is the knowledge that comes with us,  some people are really keen to understand and know about the illness and my life now is based upon, you know, I'm now going to write books and become an author, I’m a holistic practitioner. You know, I've got my qualifications around mental health. My gosh, my clinical knowledge is just literally just, you know, amazing amount of stuff I’ve had to do and IV ports Cathy I have done, saved Natalie's life. At one point, she went into cardiac arrest, and I had to do CPR to keep her alive. And so my whole life is now clinical. And as a parent carer, I'm very heavily engaged in planning services with our CCGs. And, and making quality care assurance really is a is really important to me. So that journey that I've took with Natalie, and Joel is really sort of like made me who I am today and I’m now going to move to Cornwall on the 25th of this month. I'm a practitioner, my children are fully grown. They're all in their own homes and living independently and driving and doing what they need to do best. And I'm now going to take my knowledge and my training, and I'm going to start a retreat in Cornwall, and become an author and still stay engaged with the exp by experience. Because that, to me is quality,it is a passion. And it's really important. And I just think that's something that I always do. It's very important to me, yeah, just take life a little bit slower.

 

Gill Phillips  48:22

So I think we've got a whole episode in the future about your life in Cornwall, I think we can't go into it now because it'll be … the retreat, I think is aiming to help children and give them a great experience. I've got my links with the fabulous teams in Cornwall around healthcare and specifically maternity care. So, you know, I'm sure that our stories are coming together more and more. It just seems extraordinary that our different experiences, but very important in our lives in Alder Hey and our future stories in in Cornwall, and the fact that your name is Angela Cornwall is just a bonus. So, so thank you, Angela. I think it's such an important contribution that you've made there. I'm trying to get now that …  you know, people say they want to listen to lived experience stories, they want to hear from family carers. And people on this podcast series are contributing that so knowledgeably and so generously, so let's get people listening to these podcasts and make a difference.

 

Angela Cornwall  49:28

Fabulous. Thank you very much for inviting me.

 

Gill Phillips  49:31

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.