Breaking down barriers to healthcare: podcast transcript

Podcast: Making healthcare more accessible for disabled and neurodivergent people

Introduction

Ruth:

Welcome to the Helpful Podcast for Families of Disabled Children. I’m Ruth Stone, and I’ll be your co-host for this episode. Today, we’ll be discussing what can be done to improve access to healthcare for neurodivergent and disabled young people and their families from underrepresented communities.

I’m a senior parent advisor on Contact’s By Your Side project where we support families in some of the major children’s hospitals in the UK. We see first-hand the struggles that parents go through in hospital, financial pressures and the stress of having a sick child means it can be such a difficult time for parents.

So on with the episode!

Neurodivergent and disabled young people and their families from underrepresented communities have less access to healthcare services. They have poorer health and life expectancy as a result, and many of these young people and families are not involved in health care decision making and are less heard within research. A two year research project funded by the National Institute for Health and Care Research set out to find out why this is and what can be done to make things better.

This project was developed collaboratively between Contact, Alder Hey Children’s NHS Trust, Edge Hill University and the Northwest National Network of Parent Carer Forums. With the research now published, we’ll be looking back on the project and speaking to some of the key people involved.

I’m joined by Contacts Manager for Early Years Participation and Insights – Mary Mulvey Oates.

Interview with Mary Muley Oates – Co-lead on the research project

Hi, Mary. Can you tell us more about what you do at Contact and your role within the project?

Mary:

Hi Ruth. Say thanks for inviting me today. I’m Contact’s manager for early years. So I run our early years DfE funded program, but I also run participatory projects including this research.

Ruth:

Brilliant. How did you choose the communities that you’d be focusing on? And how did you go about finding those participants? Cause that must have been quite challenging.

Mary:

Well, we knew that in the North West of England there’s pockets of deprivation and areas that really have a lot of challenge for communities and parent carers and young people with disabilities in terms of accessing healthcare, but we wanted to ask Parent Carer Forum, so we got together with the regional meeting of Parent Carer Forums in the North West. And we asked the parents who were the most likely communities to be struggling to face barriers to get access to healthcare. And the Parent Carer Forums told us that they were working with families from Roma Gypsy communities, from the refugee and asylum seeker communities and also neurodivergent and disabled parent carers were one of the groups who were facing more barriers and challenges to get access for their disabled and neurodivergent children.

Ruth:

We actually see that so much in the hospital project that those communities are struggling to get the right treatment for their children because they find it very difficult to have their voices heard, so it’s so great to hear that you were amplifying those voices.

Could you tell us a bit about the research you collected and how you collected it?

Mary:

So well, first of all, we worked really closely with some trusted community connectors. So we built relationships with an organisation called Kaskosan in the North West. And actually we did some training with Kaskosan to understand heritage and language of Roma Gypsy communities so that we were beginning the research from the starting point of respect and understanding of culture and that developing or what we call cultural competence.

So we worked with refugee organisations to begin to build connections with communities and families from those groups and we also collaborated with the Greater Manchester Youth Network who support young people to have a voice in the Manchester Northwest area.

So what we did was we used the Lundy model, which is a model that’s quite often used in hearing from young people in research, and we started from a position that everyone we worked with was equal partners. So we made sure we gave space for parent carers and for young people to actually challenge what we were doing and to design the project from the outset.

We developed online surveys with the parent carers and we use really careful language to do that. We developed storytelling to hear from young people, from the Roma Gypsy heritage because that was a different way of working that made sure that we could really hear those voices who would otherwise not have been involved in research.

And then we designed focus groups with parents who would probably not otherwise have shared their voice. And we had over 250 participants that took part in the research.

Ruth:

Amazing. And so many people. So what were some of your key findings?

Mary:

Some of this is quite hard to hear because children and young people and parent carers said that accessing healthcare was challenging and there were difficulties for them in making and getting appointments in navigating services and also in communicating with professionals, but also that healthcare environments could be really overwhelming.

Interacting with services was sometimes described as causing trauma, like causing harm to parents and to young people, and that led to anxiety and real distress for families and for children.

And we heard about some experiences of trauma as a result of accessing healthcare services, which is kind of the opposite of what we know that NHS professionals want to do, they don’t want to cause harm to families and to children. There’s something about the system, the way the system is working, which meant that families sometimes end up avoiding services or ended up accessing healthcare in alternative ways, which could really be quite damaging.

Children and young people and parent carers said that they felt judged, and they felt discriminated against. And sometimes they were from ethnic minority communities or communities with protected characteristics, and there was a lack of understanding about their culture, sometimes about their disability or the neurodivergence, but also about their maybe their language.

So some of the young people and parent carers had those what you might describe as intercepting identities, so perhaps they were from a minority community, but they also were identified as neurodivergent and so they had that intersecting identity, which meant they had additional barriers to accessing healthcare and that layered disadvantage.

Sometimes children were offered reasonable adjustments at their appointments which was just fantastic. There were great examples of that happening, but other times we heard that parents really were not offered adjustments, and that meant the parents struggled to bring their child into the healthcare setting.

We’d done the sensory project with Alder Hey hospital, so we knew about just how overwhelming healthcare environments can be for our neurodivergent families. And so when we heard that families were really sometimes struggling to make a call at 8:00 AM to make the doctor’s appointment and it was just not possible. Sometimes for some autistic adults they found that really stressful, like a real barrier at 8:00 AM to call to make an appointment at the GP.

For parents who were from non-English speaking backgrounds, they didn’t have perhaps easy access to the GP, and if they then really needed care for their child, they went to A&E, they went to urgent care and then they felt like they were being judged by the healthcare setting or the professionals there, when they just really needed the service and they didn’t know where to go and where to turn. So it was really, it was really hard to hear.

Ruth:

That it sounds like there were some quite shocking examples. Were there any specific stories that have stuck with you?

Mary:

Yeah there were examples we heard about one young person who was a wheelchair user who had to be carried into the GP surgery by other patients who just happened to be in the car park because they couldn’t access the GP with a ramp. You know, so just very basic access needs were not being met in some cases.

We heard from parents who expressed real just exhaustion from repeatedly having to explain that about their child’s complex needs. Having to retell their stories so often that kind of caused a trigger or a trauma each time they had to retell their story.

And we heard from families who really were afraid of social services getting involved over things like minor injuries because they’d had bad experiences in the past, and there had been misunderstandings or what they felt to be prejudice against their community and that was hard to hear.

We heard from one young man who was a young black British man who was a young autistic man, and he had experienced a lot of what he described as prejudice and hostility in his community. But he said to our researcher, I didn’t expect to face that when I came into the NHS for my healthcare appointment. And he expressed that disappointment at that treatment and being made to feel less than human.

And so those stories were hard to hear. But it was important that we were able to hear from those young people and those parents and families.

Ruth:

Fantastic. You’re so important to amplify those voices, as you say.

So what do you think practitioners can do to make healthcare more accessible to these communities?

Mary:

What we’ve heard a lot about is people feeling like they’re not being treated with humanity, and that’s quite a big thing, but it’s also small. It’s all the small things.

So what are the things that you can do as professional to be compassionate and to show that you care. And sometimes that’s about making those reasonable adjustments, taking the time to think about what this family might need to help them make their appointment go well, ask that question – “what will help? What would help you to make this appointment go well ?”.

And just reading the notes before the parents come so then you’re not asking them to retell their story, but quite often we noted that systems were falling short and that really kind, compassionate staff were having to root around the systems that created barriers. So thinking about what systems are getting in the way of parents and carers and young people to get access to the services that they need for their healthcare and their disability.

And just using clear language and clear visuals, avoiding jargon and acronyms. It’s not new things. These are all things that won’t surprise people, but they’re really, really important to make sure that we have equity and access.

And then just providing qualified interpreters – thinking about if this letter is going out to a family who don’t read English. How can I make sure that the family will be able to read my letter that I’m sending out?

And then just creating those warm, safe spaces where families feel respected and can be heard.

And quite often, that’s about working together with community organisations who connect with and support those families.

Ruth:

Thank you, Mary. We see those kind of issues so much in the hospitals. I don’t think there’s a day when we’re supporting families in the hospital where we don’t hear those stories and the small changes that healthcare professionals can make have a huge impact on the outcomes and the experiences of the child or young person and the parents. So thank you for that.

Mary:

Can I ask you a question Ruth?

Have you come across things that healthcare professionals are doing differently or whether they really changing things or adapting things to help families and children?

Cause I feel like that must happen. It’s happening every day. And I know that healthcare professionals are really caring and kind a lot of the time. So I just wondered if there’s anything that you’ve noticed?

Ruth:

Absolutely, I think that healthcare professionals want the best outcome for their patients and it’s so amazing to see when they put things in place to make things easier for that child or young person’s experience.

Like if they know they’ve got a child coming in who has English as a second language or they have a learning disability or they’re very anxious, that they put things in place like the play team like a translator so that another family member isn’t relied upon to perhaps hear very challenging healthcare information.

Sometimes healthcare professionals will walk a family around to us (Contact Parent Advisors) when we are in the hospital and they stay throughout the interaction and they listen to what the parent needs.

And I always feel when a healthcare professional brings a family to us, it means so much to that family to have that holistic care and they have their needs taken seriously. So when we see those things, I know what a difference it makes to parents because they tell us all the.

Mary:

By Your Side is such a fantastic service and the families really, really, really benefit from that in the hospitals where you are.

Ruth:

So just coming back to your project, Mary.

What are the next steps of the project?

Mary:

So we noted when we were doing the work that that relationship building was so key to the research and the way we worked. And we really wanted to move at the pace of the communities that we were working with. Someone said recently that we moved at the “pace of trust”. And that was so important to us.

So we want to do more projects like this, but we’re quite careful about the projects that we would take on because we need them to be community led by the parent carers that we work with. So we want co-production and those kind of methods to be there from the outset.

So we have a strong desire to keep working with communities to shape future research and to work with our partners in the North West to really influence service change if we can. So Contact wants to continue to do that and I know the National Network for Parent Carer Forums does fantastic work to influence service change and we want to be able to share the learning with professionals in policy to make sure that we can we can influence more equitable healthcare services and improve access for families of disabled children to make sure that they can get better access to healthcare in the future.

Ruth:

Thank you so much. It’s been really interesting to hear about how you got to where you did and your findings. It’s such an important piece of research. So thanks so much, Mary, for joining us today and we look forward to continuing to hear these communities voices. Thank you.

Mary:

Hello, this is Mary again and as I shared in my conversation with Ruth, a core principle of the research project was that it was co-produced with the underrepresented communities and the parent carers that featured in the research. And so with that in mind, it was essential for us to include the voice of at least one of the parent carers who was leading the work in this episode.

So it’s my pleasure to welcome Donna Phipps, who is a parent carer and also the chair of Liv Pack, which is the Liverpool Parent Carer Forum.

For any of our listeners who are not familiar with Parent Carer Forums – a Parent Carer Forum is a group of parent carers who represent other families in their local area, so their collective voice helps to shape local services across education, health and social care to ensure that services meet the needs of families with disabled children.

In fact, you can find out more about the impactful work that these parents are doing across England, and you can find your own local forum by visiting Contacts website.

Interview with parent carer Donna Phipps – Chair of the Liverpool Parent and Carers Forum

Welcome, Donna. Thank you so much for joining us today. Can you tell our listeners how you first got involved in the access to Healthcare Northwest project?

Donna:

I think our initial first involvement was a conversation within the North West Parent Carer Forums about underrepresented families within our region. I think for Liverpool we have quite a diverse amount of underrepresented families. So for us it was talking about what we knew that our families found hard when they were going through the healthcare system.

Mary:

Thanks, Donna. Can you tell us how did you find working on the project and with the research team?

Donna:

It was really, really good because they listened and heard what parents were saying to us, but also listened to what maybe some of our suggestions were. And I think for us as Parent Carer Forums, we do have that knowledge – we are parents ourselves, but it’s also listening to other areas and knowing that we weren’t the only ones cause I think as most parents, if we’ve got any difficulties whether that’s walking into an office or walking into a hospital. Sometimes we always have those feelings, but knowing that there are others around that are feeling the same made us more as a union so that we could try and help and resolve some of those difficulties and try and strengthen.

Mary:

As part of the research project you and I work together on the parent advisory group. This was a small group of parent carers who were neurodivergent or disabled themselves, and you helped to shape the language and the questions that we asked other parent carers. And then you discuss the findings and the priorities for future work. And we co-wrote a summary of the findings, which is on the website.

Donna, can you tell us anything interesting that came out of those focus groups and those meetings?

Donna:

What we noticed, when we had those meetings was that many of our parents had difficulties themselves and it was very much about listening to their stories and trying to, not fix it because we can’t fix everything, but make some of those challenges more accessible so that they weren’t challenges for them.

We noticed that if our children and young people have got a neurodiverse condition then we are likely to notice that a parent has got that too. Sometimes for them, walking into any medical place is an absolute worst nightmare, but it was listening to their strategies that some of those parents had.

But it’s also knowing what’s available, especially in your hospitals. We’ve got a fantastic hospital, but it is knowing what is available there that they can make that journey and make that appointment or make that blood test a lot easier.

As a parent of a SEND young man myself, I make sure I’ve got everything sorted. We’re always reiterating to our young people, you know, “you’ve got the hospital today, you’re gonna have this appointment, this is the time we’re going to get there. Have you got XY and Z to occupy yourself?” But we never remember things about ourselves, and it was things like, make sure that we’ve got stuff, make sure that we’ve got enough drinks.

I think for us it was about making sure that parents had a list of questions written down that they might need to ask and just making sure that all our relevant information is on our paperwork.

But also maybe to advise that mum or dad have a disability.

And it’s about giving that information, but maybe only telling you story once, because I think for us as parents, it is really hard.

I think through this project it’s very much about listening and hearing, but also knowing that they’re not the only ones and it’s about trying to empower them to be able to support themselves.

Mary:

It’s so interesting that other parents advice is often the thing that can really help.

Donna, you’re chair of the forum, and we know that individual families can seek help from their Parent Carer Forum in their local area.

Is there anything that the forum does to influence what’s happening in terms of accessing services?

Donna:

Absolutely. We sit at strategic boards and we sit on the SEND Partnership Board. We sit on a Health Partnership Board and we will always hear what parents are saying and we can pick those up and go “this is the trend that we’re seeing at the moment. What are we going to do about that?”

And I think one of the good things about us, is that we really do have a really good working relationship with both our health partners and our local authority partners. And if we go to them and say, you know, this is causing an issue for parents, we are listened to.

And we have some fantastic health colleagues that will go “right ok, we will sort that or see what we can do to make things better, or actually I didn’t know about that. Let’s find out. Let’s bring up a focus group. Let’s see what’s happening and how we can change it”.

It could be about wheelchairs. It could be, you know, it could be about ASD and ADHD pathways.

Mary:

Well, it’s really quite something that you’ve built the trust with your local area and with your commissioners and also with the families that you work with.

And Donna, I know you’ve got your own lived experience of having a young person and using healthcare. Have there been any times when things have gone really well? Or any particular challenges that you’ve experienced with your young person?

Donna:

So I have a young man who is 23, who is neurodiverse and has about 17 different, I don’t want to say labels, but he’s got conditions and difficulties. And for him, when we went to the Children’s Hospital, they were really good. And they were really tentative and they knew how to speak to him or speak to me, know those signs. If the sensory room was being used, they would put us in a side room, so they really catered for him.

When we moved over to adults, it was very different and we had to learn, but speaking to with the parents really helped and supported us.

For him, it was quite lucky that we have a hospital in Liverpool that had a 24 hour cafe. So that’s where we would go for A&E because he has interoception so he’s always hungry. So for him the 24 hour cafe was the best place at the time.

And then unfortunately, COVID hit and we’d had a good experience. And then just as we were coming out of COVID, he had a really bad experience.

So I spoke to the head of the Trust to say that simple little changes would have made our experience a lot better. So triage, if triage says 15 minutes to a young man who is neurodiverse, 15 minutes is 15 minutes, is not 16 minutes or 66 minutes. So it was about making sure that the board signs were updated because actually if it was difficult for my son, then it would be difficult for many adults because for us in our city, neurodivergence is very big. And so if he found it difficult, then they would find it difficult. And maybe that little bit of a change in writing and saying it’s actually 45 minutes, then it lessens the blow a little bit instead of that young person going, 15 minutes is up, 15 minutes is up. Not that he knew how long 15 minutes was, but when you’re sat down doing nothing, you know, it’s a lifetime.

So we left that A&E. We came home because he wouldn’t go through with anything, he said “I’m going home”. And then the next day, he said “Mum, I really do need to go to the hospital”, so he went to one of the other hospitals and it was a very different experience where the LD nurse was with us. She was asking all the questions that a triage would ask, but made sure that we had that information. We put him into a different room and his experience then was, even though he was there because he wasn’t well, was a better experience and a happier experience.

Mary:

That’s fantastic. It sounds like the Learning Disability Nurse played a vital role in ensuring that he had a good experience at that hospital.

For anyone who hasn’t come across that role before, the LDA nurse is a Learning Disability Nurse and their role is to support people with the learning disabilities and their families.

I know that learning disability nurses are not available in every hospital or GP practice. But do you ever come across parents who don’t know that this service exists?

Donna:

As I said before, it’s about knowing what we’ve got in the city and within our within our hospitals. So every year we do a Local Offer Live and we ensure that we have representation from our adult hospitals and our children’s hospital, and both lots of our LD nurses are there. And the amount of parents that go, “I never knew that that service was there” is so disheartening, but actually inspiring to know that they do know about it now, and if they hadn’t have come to the Local Offer Live that we do, then they would never know that and their experience wouldn’t be as good as what our experience is now every time that we go.

Mary:

Thanks, Donna. Before we finish, do you have anything else that you’d like to share with parents and carers who are listening?

Donna:

I think for any parent and carer that is going through this, it’s about speaking to your Parent Carer Forum, knowing what’s out there, but also knowing what you need as a parent, what do you thin is gonna help you as a parent to get through that appointment.

Write down those questions that may crop up because I think sometimes when we go into appointments, you know, they throw an awful lot of information at us and then go, “any questions?” and 9 times out of 10, we go “no, no, you’ve answered everything that I can think of”. And then as soon as we walk out the door, it’s very much, “oh I should have asked this and I should have asked that”.

But also go on our Facebook pages and ask those questions. An awful lot of us as Parent Carer Forums (PCFs) have a closed pages so parents can ask things anonymously.

No question is a silly question. There’s no manual for raising children. Every child is different, but it’s knowing what we can ask for, what should be there to be able to support our child or young person.

I think as parents, if we don’t know what we’re going into, our children and young people will live off our anxiety because some of them can do that.

But it’s very much about what can we do to support our families to get through that door. And there are thousands of us that have probably been in that predicament at one point in our lives of raising our children and young people. And it is daunting because we go, “well, I’m just a parent”. We’re not just a parent, we are an advocate for our child and young person and you know, if something’s a bit off and you’re unsure or you need them to repeat it. Then ask them to repeat it. Don’t feel embarrassed or anything like that because you won’t be the first and you definitely won’t be the last.

But it’s also around making your space safe so that the appointment or the experience is one that is the best it can be, and that children, young people and our parents and carers will walk through that door again, feeling a hell of a lot better and more empowered.

Mary:

Well, it’s been an absolute privilege to hear from you today, Donna, and to work with you on the project. I learned so much from you and from the parent carers that were involved in the advisory group on our research and I’m really grateful for all your work that you do to empower parents.

I know the parents out there listening will be really pleased to hear about some of those examples that you’ve given us about where they can prepare ahead, understand what’s coming and ask for what their child needs to make their appointment better.

But also it’s great to hear about the work you’re doing to change the system and influence staff and healthcare services to be the best that they can be for families of disabled and new and divergent children and young people.