33. Aishah Farooq - children and young people need a voice too!

Today, we are  talking about health care and support for children and young people, so of course it is vital to hear from that age group. I‘m delighted to welcome Aishah Farooq, a young person who is using her lived experience of healthcare services to bring change at national level.

Aishah talks about her journey to become a national advocate for children and young people, and why this matters.

Aishah is also a student at the  University of Bristol  … where I studied many years ago!

I spotted Aishah and connected with her through the fabulous work she is doing, working with the NHS in many capacities around listening to children and young people and finding out what matters to them.

Aishah was recently appointed as a board member on the children and young people transformation programme at NHS England.

Lemon lightbulbs 🍋💡🍋

• If we are talking about services for children and young people, we need to hear from children and young people! Coproduction matters!
• There are tools to help - eg The 15 steps challenge … and Whose Shoes!
• Young people’s needs are different
• Don’t be tokenistic. Listen to children and young people’s ideas and suggestions first - before you open the floor to others
• Engaging with children and young people in a meaningful way, like everyone else, shapes how they feel about staying involved. 
• Children and young people find it very rewarding to see their suggestions for healthcare improvements being valued and implemented and to feel that they are helping young people of the future
• It is powerful to hear directly from young people -  you feel you  want to change things  -eg health inequalities
• It is exciting to work alongside passionate people. They inspire you to believe that your contribution is valuable and to get more involved
• It is very fortunate to meet inspirational people early in your career! They listen, believe in you, and inspire you to take the next steps
• Children and young people make up one third of the population – their voices should not be ‘seldom heard. They bring a different perspective.
• When clinicians say, “I never considered that before” …that is a proper lemon lightbulb moment. It will change their practice!
• Truly listen to children and young people. Even if you can’t have a bouncy castle in every outpatient department, they will have ideas and suggestions you have never thought of!
• Many examples of personalising care for children. are very simple and just take imagination, rather than money.
• Good to see the key themes and ideas of the podcast series weaving together.
• The National Asthma Care Bundle. What it is and why it will make a difference.
• Schools need good training to support children with asthma.and other long-term conditions 

Resources

NICE  guideline - babies, children and young people

National bundle of care for children and young people with asthma

Good luck in all you do,  Aishah. We look forward to seeing you go from strength to strength, shouting from the rooftops,  advocating for children and young people! You said this was your first ever podcast – I am sure it will be

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Chapters

• 0:58 If we are talking about services for children and young people, we need to hear from children and young people!
• 2:30 Aishah talks about her journey to become a national advocate for children and young people, and why this matters
• 4:00 The 15 steps challenge
• 4:40 Young people’s needs are different
• 5:48 It is so rewarding to see young people’s suggestions for healthcare improvements being implemented
• 6:50 Aishah joined the NICE guideline for babies’, children and young people’s experiences of healthcare. Young people were kept at the front of the discussions. NOT tokenistic.
• 9:00 … and then the national NHS England Youth Forum
• 9:25 Aishah has led on a healthcare inequalities project, looking at the social determinants of health care.
• 10:10 The data was incredibly rich and powerful. You feel you really want to change things when you hear directly from young people.
• 10:56 The report is being actively listened to by the Office of Health and Improvements and Disparities, helping shape national policy
• 10:57 Aishah is now a board member for the children and young peoples transformation programme - it is exciting to work alongside inspirational people.
• 11:42 It’s important for children and young people to see that something has actually come out of their contribution, that they are helping children and young people in the future
• 12:38 Shoutouts for Sarah-Jane Marsh and Kath Evans! CYP Extraordinaire!
• 15:00 Kath definitely needs to be a podcast guest!
• 16:01 It is very fortunate to meet inspirational people early in your career! They listen, believe in you, and inspire you to take the next step.
• 17:02 A clinician encouraged Aisha to join Coeliac UK as a trustee.
• 17:32 Children and young people make up one third of the population – their voices should not be ‘seldom heard. They bring a different perspective.
• 18:38 Bob Klaber is on our stalking list! He talks about the curiosity of children – the 19 Whys! They see things differently!
• 20:00 When clinicians say, “I never considered that before” …that is a proper lemon lightbulb moment. It will change their practice!
• 20:03 The importance of truly listening to children and young people. . And even if you can’t have a bouncy castle in every outpatient department, they will have a lot of ideas and suggestions you have never thought of!
• 20:03 Give children and young people the rains. Listen to their ideas first and then open the floor to others.
• 22:22 Give children the reins – listen to their ideas first and then open the floor to others
• 24:22 Engaging with children and young people in a meaningful way, like everyone else, shapes how they feel about staying involved. They need to know that their contribution was valued and made a difference.
• 25:48 Some examples of personalising care for children, including an Emergency Department passport. Some are very simple and just take imagination rather than money.
• 30:16 Interesting to see the different episodes weaving together. A similar patient passport was developed by Angela Cornwall in the context of rare conditions.
• 33:18 The National Asthma Care Bundle. What it is and why it will make a difference.
• 34:59 The role of schools in supporting children with asthma.
• 35:01 We will hear a lot more from Aishah, shouting from the rooftops about advocating for children and young people!

Transcript

Gill Phillips 00:10
My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach 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 health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. Today, we're going to be talking about 
health care and support for children, young people. So of course, it's vital to hear from that age group. 
(3 year old reads poem with Gill: “Grown ups,, walk in my shoes, walk. Walk in my shoes. It's not so hard to do. You shouldn't have to think too hard. Once you were little too”.)
 That's brilliant. Thank you. 
Now, much as I would like to, I don't think I can record a whole episode with a three year old. They have far better things to do in life, like charge about and play. But I'm delighted to be talking to someone who is going to bring down the average age of my podcast guests considerably. Put it this way, I left the University of Bristol over 40 years ago. And Aishah Farooq is a current student there. How lovely that she's enjoying and getting good support from my old university. I spotted Aishah and connected with her through the fabulous work that she's doing. Working with the NHS in many capacities, around listening to children and young people and finding out what matters to them. She was recently appointed as a board member on the children and young people transformation program at NHS England. They couldn't ask for anyone better. So welcome to the Wild Card Whose Shoes podcast Aishah, we're intrigued. Who are you? Perhaps you could tell us a little bit more about yourself.

Aishah Farooq 02:27
Thank you so much for having me today. So where do I start? I am a huge advocate for children and young people, I think it's so important that growing up we have the best health care experiences and a voice and a say in everything related to health care. Because growing up, that's the sort of experience you'll be taking with you. And that's something that I've beenchanneling for quite a few years. So you're right when you said that I am currently studying at the University of Bristol, I'm in my second year of pharmacology, which is going well, but tricky, but I do enjoy it. 
And from my own personal experience, I had to access healthcare services when I was around 16 to 18 years old, at my local hospital trust in Bristol. So I had a very turbulent journey. And I was in and out of the hospital, I was constantly in outpatient appointments and seeing my GP, multiple times a week throughout that time. And it was it was scary. I didn't really know what I was doing. And it was a real kind of spanner in the works for me at the time. And so lots of things went right. But some things did go wrong. And that was my main motivation. When I joined my local youth forum at my hospital, I thought I really want to change the things that didn't go quite so well and make a real difference for children and young people growing up and who might be experiencing the same things that I was. So when I joined the local youth forum, I had the amazing opportunity of being involved with the 15 steps challenge, which meant that I went on the wards with the other youth members and literally had a feel for the first 15 steps. So we looked at the healthcare environment, looked at the healthcare professionals in how they were treating patients and just the environment as a whole. And the idea behind the 15 steps challenge was really to look at it as if I was a patient would I would I feel comfortable being treated here and I think it was so good to have that kind of feel. Because if I had been involved in something like that before I went through my whole kind of healthcare journey, I think my experience would have been a lot different. And following that 15 Steps challenge for the initial wards I had with the local youth forum, we went back to the same ward and did a re-accreditation and we just followed the whole journey to make the whole ward young person friendly, which I think is so, so important. Because when you're that 
young and you're experiencing healthcare services for the first time, it's an unknown territory, you really don't know what you're doing. And I think there's a real feeling from healthcare professionals as well sometimes in needing the right kind of support and almost guidance in how to treat young people. 
 Because we are different. And we do require different support mechanisms and need. So I absolutely loved my time on the local youth forum, which I'm still involved with at the moment. But that acted as major springboard and from that I joined the University Hospital Bristol and Western Council of governors. So I'm a young governor for the trust and have been the last couple of years. And I think for me, that has been probably the most pivotal thing in my whole healthcare advocacy journey. Because for me, talking to decision makers and challenging them about how to improve services for  young  people, or how to bring in a young person's perspective into things has just been fantastic, and more enlightening experience, because I've just, I've had discussions with non exec directors and the rest of the Council of governors where they've turned around and said, I didn't consider that, because it's something you wouldn't, and it's something that you'd hear from a young person. And I've just had the best time and I still continue to input directly into the Council of governors. And it's really great. And I think that's the best part about it, is seeing my suggestions, and the local youth forum’s suggestions come to fruition when you actually see change happen. You know, that's a job done, right. And so from that, I thought I wanted to take my journey, a step further. So I joined the NICE guideline for babies, children and young people's experiences of healthcare. And I worked alongside the committee and alongside some fantastic lay members who are young people, and two parents as well, representing the voice of neonates because you don't want to forget the babies. Well, we are all babies at one point in our life. So I joined the committee, and from scoping through to recommendations developed what the guidance would look like. And I think there's always a real feeling that when you involve a young person, their involvement can be tokenistic. It can be very kind of checking a box.

But my involvement on the NICE guideline was far from that. And I am so so proud to say it because everything I had been involved with and every meeting that I was attending us as lay members, and young people and experts by experience were kept at the front of the discussion. So any recommendations weren't made…. they weren't made tokenistically so for example, in a meeting, we were asked, so we were given a topic review question. And we were first asked about our thoughts. 
And then the draft recommendation was formed afterwards. And it's just keeping our experiences at the front and then introducing the other thoughts around the room, which I think is so important. But I had an amazing time on the NICE guideline. And I'm really pleased to say that it has been published. I think it was published last year in August 2021. And we are currently working to try to implement this as far afield as we possibly can and get as many clinicians and healthcare professionals using it as we 
possibly can to. It's a really important piece of guidance. And I think it really shapes how babies children and young people want to be cared for, especially when they're going through, you know, that healthcare journey. So, after my really exciting time, on the NICE guideline, I thought I want to take the work that I've done a step further. And I want to continue kind of representing the young people that I've formed those connections with. So I then joined the National NHS England Youth Forum.

Gill Phillips: Wow!

 Aishah Farooq  09:21:
And that had been amazing to say the least because it really opened doorways that I never thought I would be seeing. And I'm really, really pleased to say that this year, I have led on a healthcare inequalities project, looking at the social determinants of health care. So the other factors, things like income, your kind of family unit, your educational background, the things that healthcare professionals know affect young people and children, but may not know how to support them with and might not know how to mitigate them. So I was leading on the project where we created a survey And the survey was there to gauge an idea of young people's experiences of those healthcare inequalities, those social determinants in particular. And believe me, the data that we got afterwards was so incredibly powerful and rich, it was just, it was so moving to the point where I thought, I want to do something here. And now like I'm doing it as a project, but you really want to change things, when you kind of hear it directly from young people, it just becomes even more impactful. And so we, as a team collected all the data, all the responses, including the qualitative, quantitative, and then anecdotal responses, and then formed a report and the report highlights some of the main recommendations that young people have told us and the recommendations that we formed as a result of the experiences that they've told us they've had. And I'm so pleased to say that our recommendations have actually formed a response to the White Paper issued by the Office of Health improvements and disparities, particularly focusing on health inequalities. So I'm so so pleased that we've heard from young people, we've got their experiences. We've put that out in a report, but that report hasn't only just gone and sat on someone's desk, that actively been listened to by the Office of Health and improvements, and disparities, which I think is a massive feat because …

Gill Phillips: It’s incredible. It's amazing. Well done!

 Aishah Farooq 11.42:
Because you don't get… I think that's a really tricky thing. Sometimes young people can have their voices heard, they can have a say, but then it's that last sort of, well, what came out of it … You've listened, you've heard, you've sat me around a table, but what's come out of it? And that for me being published was a massive, massive achievement, because it's exactly as I've said, we haven't just heard from young people, but we've actively listened used, and now hopefully going to see an implementation, that their experience is changing. And I think that's so important for future generations going forward, that they're going to see a real improvement. And through the NHS Youth Forum, I've been so fortunate to be, as you mentioned, appointed as a board member for the children and young people’s transformation program, which I think is absolutely vital in health care for children and young people across England, being the main kind of national programme that leads on the work. I'm super excited to be working with all the other youth board members and the amazing clinicians, not forgetting Sarah-Jane Marsh of course, who is an absolutely amazing chair. And I'm just very excited to start working with the team and looking more at the national projects and how we can integrate those into the new systems that have recently been established, on the 1st of July.

Gill Phillips 13.02:
That's quite some start. And that's really where when we started to actually get to know each other a bit and talk to each other and compare a few stories. Some of these amazing people like Sarah Jane Marsh, and also Kath Evans have been a key part of both our journeys. Tell us a bit about how Kath Evans came in as well.

Aishah Farooq 13:29
Absolutely. Kath Evans, where do I start? CYP extraordinaire!

Gill Phillips 13:35
Yeah, she really is. She's amazing.

Aishah Farooq 13:37
I don't think I've met … Actually, no, that's a lie. Everyone I've met so far has been so passionate about children and young people. And I think it's not just my personal motivations that really kind of drive my eagerness to help improve healthcare outcomes for children and young people. But I'm also so  inspired by the clinicians, the healthcare professionals, you know, whether that's doctors, allied healthcare professionals, or more kind of senior decision making leaders that I'm actually so yeah, I'm just so driven by. And it's just seeing their enthusiasm and passion that really kind of fuels my motivation to say I just had the pleasure of meeting Kath Evans, through the NICE guideline on babies, children and young people's experiences of health care. Okay, so Kath, was also a member of the committee, and rightly so, I don't think they would have been a better fit, thank her. And she brought so much perspective and insight. And she at the time was also involved with the NHS Youth Forum alongside the other things that Kath has always dipped in and out of, but just working with her and looking at her passion and enthusiasm really just made me think, wow, you know, everything that I'm doing every kind of meeting I'm attending or every kind of presentation I'm going into, on how to engage young people better. It's so worth it when you have clinicians like Kath around who are there to back you up support you. I recently did a presentation on coproduction and Kath Evans was amazing and super responsive and saying, yes, I'd be happy to do a video and show an example of good coproduction. She's literally always there when you need her like, anything. Any advice? Anytime Kath is there.

Gill Phillips 15:26
Do you think I should have her as a podcast guest?

Aishah Farooq 15:28
100%!

Gill Phillips 15:29
I think so yeah, I think she needs to be there because that's what I've seen. You know, I've been with her. I remember an event at Great Ormond Street. And that was my first experience of really seeing Kath working with young people. And also some of the work that we did around the CYP Me First communication project that I was mentioning to you, Kath is extraordinary, isn't she and lovely too .

Aishah Farooq 15:53
Absolutely. And it's just her drive and passion. And like you said, she's a CYP extraordinaire.

Gill Phillips 15:59
And what I'm hearing … and I'm feeling to be honest, quite envious about is, you know … we've got our shared University of Bristol experience, but obviously mine all that time ago, I think, Wow, I wonder how much more I'd have achieved if I’d met people like Kath, Sarah J Marsh , when I was your age, and to hear your passion and how they're affecting you so young, you've got it all ahead of you. And it's very, very exciting. 

Aishah Farooq 16:23
It's so exciting. And I think that it's, as you said, it's literally meeting the right people who kind of drive your passions, because another thing that I, through my own experiences, have really seen is how pivotal clinicians are, not just when you're being treated, but also just from the outset. So everything that I've been involved with, I've had some super duper, like eager and keen clinicians and healthcare professionals, who have been really supportive when it came to me raising a suggestion or a concern.  And I think that has been really empowering. And I think if I hadn't had those really good encounters, I might not have done the things that I have. So I've very, very recently joined Coeliac UK as a trustee. 

And that's the first time that I have done a trustee position. But I'm so excited, it was actually suggested by a clinician of mine, he said, you've got some real experience, and you are so motivated by the people that you're around. Have you thought about it? And I thought, why not? Because at the end of the day, children and young people's voices shouldn't be seldom heard, we make up a third of the population. And I don't think that's often recognized. That's a large proportion. And to not hear from them just feels like you're missing out on such a range of voices. And if you aren't hearing from that diverse range of people, how are you then shaping your policy, your strategy, your healthcare service design. So that's why I'm 100% for children and young people being on boards being part of youth forums being everywhere and anywhere because we bring a different perspective. And it's so so important to see that. And I think that's 100% what all the clinicians that I've been in touch with I've ever kind of worked with have seen. They've always seen that potential that young people bring and that diversity, it's really important.

Gill Phillips 18:28
And I think it's not just … you mentioned obviously a very large proportion of the population, but it's it's a very different portion of the population. So it was making me think, Bob Klaber’s very recent episode. 
And he … one of the quotes that stuck with me from that … he's an amazing pediatrician. You'd love him - I don't know if you've come across him yet, but you will do

Aishah Farooq 18:51
I have. I mean, I've I've definitely seen his work around, but I haven't ever had the privilege of meeting him. He's on my ‘next person to have a meeting with.’

Gill Phillips 19:00
He’s on your stalking list?

Aishah Farooq 19:01
Absolutely.

Gill Phillips 19:04
He’s on my stalking list as well in that I haven't actually met him in person, but I did have the privilege of speaking to him on the podcast. And the reason I was particularly mentioning that other than just the fact that he's the kind of clinician exactly that you're talking about, Aishah in terms of really, well literally being down there on the floor with children … He says he doesn't wear a tie because it would get caught in their nappies. You just have this lovely picture, you know, but the the particular thing was, he said, there's a well recognized quality improvement approach called Five whys which is very powerful. And he said, but children would naturally have I think he said 19 whys, it's just like what children do that you question things. And that can be incredibly refreshing and they just see things differently. And things that are taken for granted. And I loved it. I mean in terms of one or two other things I've picked up so far, so good. As you probably know, I'm trying to collect lemon light bulbs through the series. And you were talking about, you know, clinicians who hadn't considered that before. 
That's a proper lemon light bulb. You know, I never actually thought that or realised that. And also the genuineness, I think of putting children and young people not in not just not tokenistic, but the opposite of that I love the idea of hearing from the children and young people first, and then letting the other opinions fit around it, rather than as an add on. And in terms of power and feeling valued and feeling part of everything, and probably getting the best out of people because you know, that your voice is being listened to?

Aishah Farooq 20:40
Absolutely. In fact, that's a really, really key point and a super important point that you've mentioned. I think, in trying to engage involved in coproduce with children and young people, it's so important to not be tokenistic. And I think whenever I've had conversations and whenever I've kind of presented to clinicians and healthcare professionals about engaging and involving young people in designing and shaping healthcare services, and actually strategy and policy, the things that we come out with it can be things like, okay, how can we involve them, not tokenistically?

How can we ensure that, you know, we are actually using their voices actively and not not hearing them as white noise in the background. And if I'm honest with you, I have, have recently done a presentation on this. But I think more say than that, from my own experiences, there's something around truly listening, I think it's important to recognise that every suggestion a child or young person makes isn't just done on a whim, you know, I think children and young people do have a thought process, even though lots of people may think that, you know, they come up with random things. They're not random, they're spontaneous. And there's a reason. And, okay, I admit not everything can be used in, you know, designing or shaping your healthcare service. Not every suggestion can be used, otherwise, the NHS would be a very, very fun place for children and young people. And you probably won't have bouncy castles in every outpatient department. But I think there's something around acknowledgement, there's something around recognising, as you said, Gill, rightly, something around really valuing the young person and the child's opinion and suggestions, because, as I said, you know, they are experts by experience, they are thinking about it before saying, so I would always recommend that if you are engaging, involving and co-producing most importantly, with a child or young person, make sure that you value their contributions. And I think there's also another element to making sure that you give them the reins. So like I said, with the NICE guidance, the recommendations were asked to us first, as young people and experts by experience, you know, the lay members. And then the floor was opened to the other committee members who definitely had a say, but the young person's recommendations are always opened kind of first. And I guess that's a, that's a real kind of, for me, a showcase of letting young people lead. I think it's really important that if you are going to leave young people feeling really empowered, and if you want them to come out feeling, you know, really kind of, yes, I'm going to coproduce again with another clinical team, that you really let them lead and you let them shape the project itself. I think definitely making sure that they have the right support mechanisms in place is really important. But also at the same time giving them the reins, or letting them choose the elements that they want to focus on. It's really important. And I think you would definitely see a real kind of uptake in engagement. And you'll see a real improvement in the relationship between the healthcare professional and the young people who you're coproducing with.

Gill Phillips 24:12
That's so interesting. And I suppose my mind's going off in terms of thinking of my other work and people who are regarded as you know, that awful phrase ‘hard to reach’, and some of the work that we've done recently, particularly around health inequalities and people from black and ethnic minority communities. And I think those same principles that you're applying really do apply to everybody. And I love the way you talked about if it's done, right people, it's the next stage after that initial engagement, isn't it?

Aishah Farooq 24:44
Absolutely.

Gill Phillips 24:45
Are you completely turned off? Nobody was listening or I never got to hear anything about what happened as a result of my contribution, or are you wow, I'm going to get more involved, deeper involved. Just the exact journey that you've described about how you've been hooked into wanting to do more.

Aishah Farooq 25:01
Exactly. And you know, you've literally captured it because that's, that's really it. I think, when engagement is done well, when you've really been truly involved in something, it really kind of sets you up for the next thing. And I think it's really misunderstood because the doors and the opportunities, after you've done one project, endless, you can literally go on and do lots of other things. Because you've had that good experience. But if you haven't, it really stops you. And personally, like I said, young people and children account that a massive proportion of the population I couldn’t imagine going to an outpatient appointment and it being not kind of young person friendly, if I was that age.

Gill Phillips 25:47
And some of the wonderful examples that I hear and see on Twitter and so on. I mean, I don't know things like … is it Elsa? The Frozen character? Something like, you know, picking up children's characters. And perhaps if you've got to have the, you know, really awful experience of having radiotherapy cancer treatment, if you can suddenly be a superhero, or, you know, Elsa from Frozen, or whatever it might be your character, and somebody's bothered to make that for you. And it's exciting.

Aishah Farooq 26:20
Absolutely.

Gill Phillips 26:21
And it just takes some imagination. I mean, some of it costs money, I suppose the sort of things I was going to ask you before we finish. I think you've done brilliantly uncovering your tips, like top tips as we go along. But going almost back to the beginning of the conversation and the way that the best people have listened to children and young people, what are the kinds of simple things you know, perhaps that don't cost money that might have happened as a result or have happened as a result of that sort of genuine engagement?

Aishah Farooq 26:50
I think and that's a really, really good question. I think really simple things that I've seen kind of on a local level, within my hospital trust have been things like having a toolkit developed. So we had a passport developed for the Children's Hospital, I think it was for the emergency department. So it was like an ED passport when I come into ED. These are things that you should know about me. And that was shaped by the local youth forum. So it kind of went out to us, we had a look at it sent back, they made some adjustments. And then we had a look at the final piece. And it's been so successful in its rollout because children and young people when they are going to ED are given that passport, and for them. It's a known fact that EDs are really busy places and sometimes in the hustle and bustle, especially when you're a child or young person, you can feel slightly neglected because of just the sheer busyness. And I think having that passport and just writing everything down about yourself makes your journey feel a little less stressful, and just a little less chaotic, because you know that somebody's going to read that passport. And you know, when you go into the treatment room, 
somebody's going to read about your favourite color, or you know, your favourite book to read. And it's just small things like that, that make a massive difference to your actual healthcare experience, the 
journey and eventually your kind of outcome as a result as well.

Gill Phillips 28:16
.And it all links back to that what matters to you doesn't it?. For busy clinicians. Something they can pick up on quickly. Yeah, rather than just generally like massive stereotypes like a boy, so let's talk about football or something but actually it's a personalised “Oh, I bet you love the Gruffalo or, you know, whatever it might be that you know that you just have a heads up that that would be a good place to just connect with somebody.

Aishah Farooq 28:41
Exactly. And also, as a result of the passport I've had on one occasion, that following something that a child had written on their passport itself, they actually had like a cuddly toy. And they brought that cuddly toy out for that child when they came to the treatment room. And it made such a difference because he was absolutely, I was just so thrilled. He was nonstop, like crying bless him. So for him to go from the kind of unease that he was in to begin with, to feeling kind of really uplifted as a result of the healthcare professionals around him reading his passport and then bringing out that cuddly toy just made such a difference. And it's simple things like that.

Gill Phillips 29:24
These are such lovely stories to hear. I suppose that's what I'm trying to do through Whose Shoes and the podcasts and so on to collect when people sort of hide behind staffing pressures or money or resources and I mean obviously all those things are incredibly important and very real and are stopping a lot of things that would be ideal, but some of these things are more just I was going to say compassion and small things that help, but probably also in an even in a really kind of cold clinical way, help that situation to be more efficient because if the child is calm and happy. Obviously it’s a much nicer experience, but probably, you know, you get your scan results or you get whatever it is that needs to be done that way far more efficiently. The health of the child and the benefit of the services well, in terms of seeing the next person.

Aishah Farooq 30:13
Yeah, absolutely, absolutely.

Gill Phillips 30:16
Couple of things you've just said, I should really link back. So there's an episode we've already had with Angela Cornwall, and so a different perspective, again, a parent. And she talked on the podcast about Speedy Boarding, which was really relevant to children in terms of having that heads up about what matters to them. And for example, if somebody's got sensory overload, or the sort of problems that might really affect, they're just waiting in a busy room, and the appointment’s delayed, and some really specific things about arranging an appointment, perhaps at the beginning of the day, or the end of the  day, and all that kind of personalisation. So that came to mind. And she also talked about something she's developed, which was a patient passport, and it was talking about her grown up daughter, I mean, obviously, she hasn't always been grown up, you know, she's grown up now, but as a mother, over the years looking after her, and to have immediate details of her rare condition, in a very easy kind of passport, so that some knows that you know, right from the beginning, and also some work that I'm doing at the moment, been working very exciting with the maternity teams in London, looking at triage in maternity, but also postnatal handover. And this could be as basic as in a health visitor coming to a woman's door, and not knowing something so important. Like, for example, the baby was in the neonatal unit, or the baby was a surviving twin possibly, or the mother has really serious perinatal mental health problems. And if that basic information, isn't there, that relationship is, in my view, 
doomed. And to put it into some form of, you know, the equivalent of some passports on one page profile that people can get involved in, like, what's important to you? What would you not want someone to come to your door unless they know as a starting point, and then you've got all the, you know, detailed notes and the things that people ideally should know and should reach. But to reduce things into something that just just a high level document? This is a given you need to know this about them for it to be an effective?.
 
Aishah Farooq 32:37
Yeah, absolutely.

Gill Phillips 32:40
We've been talking about so many things. I've loved this conversation. And did you say it's the first 
podcast?

Aishah Farooq 32:46
I listened to them quite a bit, but I haven't done any?

Gill Phillips 32:50
Well, I'm very thrilled that this is your first podcast, because it definitely won't be your last one. And the whole nature, I guess, of what I'm trying to do is just chat to people. They're just conversations. And I think conversations matter.

Aishah Farooq 33:03
 100% you need to have that dialogue. 100%. Yeah.

Gill Phillips 33:09
So I was just wondering, there must be things that you're particularly proud of in terms of how you've used your own lived experience.

Aishah Farooq 33:18
Absolutely. So I have been so fortunate to have used my lived experience of asthma care as a child, and then through to a young adult now, to inform and shape the National Asthma Care Bundle, which I am delighted to say is currently out for implementation after a really successful phase one. And it's currently being implemented across all ICSes. So my role for the programme is a patient public voice partner. And I attend oversight meeting. So I've basically had involvement through the development and scoping phases of the bundle. And I've had literally the opportunity to say the things that worked for me and the things that really didn't do my asthma care. So growing up a really big problem that I found was just adhering and also knowing kind of which inhalers to take at the right time, because generally when, when you're kind of that young, you don't really know the importance of it. And that's something that I really struggled with. And not to mention inhaler technique growing up, I never really knew how to take my inhaler properly. And these are all things that have been captured by the Asthma Care Bundle and things that have now been properly and fully addressed so that children and young people growing up can have a smoother and better asthma care journey and are basically going to have better health care outcomes. So I'm so pleased now to be working with my local ICS and starting to implement the bundle looking at kind of pilot programmes, and still working very closely with the national team.

Gill Phillips 34:56
That's so interesting. And just for my own curiosity, really in termsof my recollections of the children at primary school, is there anything in that that would help schools to understand better about asthma and inhalers and so on, because I remember this row of little inhalers. In the school office marked with the children's names.

Aishah Farooq 35:17
100%, the major learning that I would say has come out of the asthma care bundle has been around training competencies. So kind of, as you said, in schools, you would have children and young people 
attending who have asthma would bring their inhalers who usually would be a reliever inhaler with them, just in case. And I think generally, and myself and the other patient, public voice partner on the asthma workstream have experienced it. But in schools, there was a real kind of lack of knowledge. So what the asthma care bundle has now rolled out is a training competency framework. And basically, that's a document that lists out different professionals that have different interactions with young people. So teachers are on there, healthcare professionals, including nurses, paediatricians, consultant paediatricians, and depending on kind of your exposure amount, if you like, with the young person, you have to have a certain amount of knowledge. So teachers are now included on that training competency, because it's actually come to light that young people and children spend a lot of their time at school. And you know, asthma is with you all the time. It doesn't kind of stop when you're at school. 
So it's really important that teachers have the right kind of adequate knowledge. And that's something that the training competency framework will be helping support with

Gill Phillips 36:47
Fantastic, that's really great to hear. And you must be proud that you've been involved in that. And that must make a difference to everybody. I can imagine that the children and the parents, and the teachers must just feel so much more confident.

Aishah Farooq 37:00
Absolutely. And it will make a real difference. And I'm so so so excited to see what it will bring and to see the Asthma Care Bundle come to fruition.

Gill Phillips 37:11
Fantastic. Amazing. So thank you so much, Aishah, that's been an amazing conversation. I wish you well in everything you do. I'm thrilled that you're at Bristol University, I really am. And you've got 
involved with these inspirational people early in your career. And you're gonna go far.

Aishah Farooq 37:29
Thank you so, so much for having me today and for listening to everything that I've been involved with. 
As I've said, I am truly inspired, motivated and driven by all the clinicians, the healthcare professionals that I've been treated by I've been involved with in terms of youth engagement, and just a massive shout out to everyone. I really can't say thank you enough. If it wasn't for you, I really wouldn't be here having this conversation today. So I'm so grateful that I have been involved in some way and I'm so so excited for what my future holds and for where my youth advocacy journey goes as well. I'm going to be shouting from the rooftops about children, young people until no end, they matter.

Gill Phillips 38:13
Brilliant. How can we end better than that? Thank you. I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite 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.