Dr Jane Padmore: The joy and fulfilment of working for people with a learning disability

Matthew Taylor

Hello and welcome to Health On The Line. Today we'll be talking about learning disability and we couldn't really have a better guest to engage in that very important subject. Dr Jane Padmore is chief executive of Sussex Partnership NHS Foundation Trust, which is a large provider of mental health learning disability and neuro-developmental services to people living in south east England.

Jane started her career as a healthcare assistant, and later qualified as a mental health nurse and since worked in various clinical, managerial and academic roles across mental health, learning disability and forensic services. Jane’s passionate about inclusion and is chair of the Confed’s Mental Health Network’s Learning Disabilities Forum, which was set up to support members who are working with people with learning disabilities.

Jane, welcome to Health On The Line. 

Jane Padmore

Thank you, Matthew.

Matthew Taylor

So, Jane, you've been working in mental health and learning disability services since 1990. What first ignited your interest in this area? 

Jane Padmore

Well, to be honest, I started in 1990, but I think my journey started before that in 1986, as a 16-year-old schoolgirl. We were given the opportunity to do some voluntary work over the summer holiday, and I chose to go to Tolworth Hospital at the time and worked in a unit that was for young people with profound learning disability. 

And I spent three weeks of the summer on the unit and just absolutely fell in love with working with people with learning disability and people with additional needs. And as a result of that, I thought I would like to be a special needs teacher because, in my mind, I didn't know what a learning disability or mental health nurse was. So it wasn't anything that occurred to me. 

My natural train of thought went to “I want to work with young people with a learning disability, therefore I needed special education teacher.” So I sort of went down that path and did incredibly badly in my A-levels, so didn't get into my teacher training and my mother was on the phone to a friend at the time and talking about my career and she looked down and in the wastepaper basket was an advert in the local press that said they wanted healthcare assistance for people in a home, for people with a learning disability.

She said, why doesn’t Jane apply for that. So I applied for that and it was a small home in Thames Ditton and I got the job. And it opened up a whole new world to me of working with people across the age range with learning disability and mental health problems, that sort of set me off on my career. 

Matthew Taylor

So, Jane, we're going to be talking about learning disability primarily in this conversation.

But I just want to ask you before we get into that - that journey from the kind of lowest level in terms of the kind of career development that kind of bottom rung right through to where you are today - how has your perception of the health service changed as you have become more senior over this kind of 30-year period?

Jane Padmore

I suppose for me there's a common thread. Most people come into health services because and they want to make a difference and they want a fulfilling career. And I think right the way through every level of the organisation, you have an impact whether you are frontline services or you are support services. What you're doing makes a difference to the people that we serve.

And as I've gone on through my career, I've come to the next level because I've wanted to use that step of influence more widely and felt like I needed to be at the next level to influence change. And I suppose when I look back at my career, what has been important is at every stage - whatever level of the organisation - you have the ability to make change within the scope of influence, and I don't think that has changed. 

Matthew Taylor

Yeah, I see that. And I guess it must also be, though, that that you have an understanding of what people's experience is when they are in more junior jobs or when they're just starting out in their career? It must give you greater empathy, I would have thought, for those colleagues. 

Jane Padmore

I think so. One of the things that gives me energy and helps me - often in meetings that have led to really tricky conversations, or you're going somewhere and you know that's going to be a tricky conversation - I often go into our services and spend some time with our support workers, nurses, the doctors and the patients and remember why I do this and why I'm here. And it grounds you. 

And I think sometimes as a healthcare support worker, you forget how integral your role is and how important your role is. I couldn't do my role without them and vice versa. We all have an important part to play, but I think as a health care support worker, certainly, and the reason I've moved on in my career in some ways is because I felt like I haven't had the agency to make those changes.

I really like the fact that the NHS is talking more about quality improvement and talking about changes at ground level rather than top down. And I think we've got a long way to go to make that a fully reality. But you can still see that if you look at the outstanding trusts, they're the ones where they listen to people on the ground, they listen to everybody at all levels and make really innovative changes.

Matthew Taylor

So one of the reasons that working in learning disability can be challenging is that very few people are members of teams that are fully staffed because we have major workforce issues. We've got long-term halving of the number of learning disability nurses. 

Now that trend seems to be flattening off and of course there was good news in terms of the long-term workforce plan. It was one of the things that we as the Confed, NHS employers put the strongest emphasis on when we were trying to influence that plan. 

But you wrote a really good piece in the Health Service Journal recently; talk to us about what can be done about workforce now? Obviously, if the long-term workforce plan is fully funded, if it does roll out, then we can look forward to a better future. But what do we need to do now? Because that is going to take several years to deliver. 

Jane Padmore

It is. And I also think that we've got the workforce plan, but that's only going to be successful if people want to do those roles. And I think particularly with learning disability, there's been a lot of media attention on mental health over the years. And we've seen people want to come into mental health because of that, but less so in learning disability. 

I have to say, if I hadn't have done the voluntary work, I would never have thought of learning disability. And even in the early nineties I was told I had the option of learning disability nurse training or mental health nurse training. And what was said to me at the time was don't do learning disability nursing; there's no future in that. And I sort of went into mental health nursing and that was so wrong. 

But we have seen a decline in the last 14 years to half the number of learning disability nurses in the NHS. I think what we can do now is start talking to people in schools, start talking to young people about the joy and fulfilment they can find in working for people with a learning disability.

I also think there's a huge scope for peer support workers in learning disability. I've met some really great people who have a learning disability, who work in core services and a part of the multidisciplinary team, and I think we need to really nurture that and think about our skill mix within teams and not just think of the psychiatrist, the nurse, the occupational therapist, but think more widely across roles.

And then the last bit I say on this is: I think it is absolutely imperative that we start thinking about the voluntary sector more and not just as organisations that can fill a gap that we don't have, but that can bring something different. A different philosophy, a different skill set and a different approach. And often with innovation, a lot of innovative ideas that we don't have into what we can offer in each area.

Matthew Taylor

Jane what brilliant answer. I mean, I agree with every part of that. I mean, I'm an enormous enthusiast for peer support, peer counselling, both in mental health and learning disability. I completely agree with you. But also going back to your earlier answer - I'm on the Times Health Commission and one of the things I'm pushing for is a much more concerted, better resourced national programme to encourage young people to perhaps not volunteer, but to say, spend six months between college and university working in care settings.

You know, partly that six months would be good for us because we lack staff, particularly in social care. But I think a lot of people would have that kind of transformative experience. And I think it's not just about people like you who end up staying in your career. But, you know, I can think of my wife worked in a care home when she was young. 

It's amazing how often she talks about it and the insights that it gave her. So I think we should be working much harder to encourage young people to have that experience early in their careers, because I think it's very powerful. 

Jane Padmore

I just wonder if I could add one thing. So it's a bit of an example, and it involves my daughter actually, who is studying law, and she has registered on our bank of staff. So she did her training - a mandatory training over the summer - did some shifts, and now every holiday she comes home, she comes and does shifts within the hospital as a healthcare support worker. And that means as a student, she's got an income that is reasonably good for a student, and then she comes home with earned money over Christmas or over the summer.

But then going into law, she's now thinking about the mental health law and thinking about sort of the areas of law around health that have sparked an interest for her. But the other thing is - one of the things we're doing with the students, like at Brighton University in our patch - is we're meeting them in Fresher’s Week and saying why don't you join our bank? 

Why did you come and work for us? It doesn't matter whether you're doing health and social care or you're doing something completely irrelevant. Come and register in our bank and get some experience with us and earn some money. And we're finding that that's opening people's eyes to a whole new career in the NHS and in-house services. 

Matthew Taylor

That is a really big opportunity there that we're missing, I think, to open people's eyes to how incredibly satisfying work in care can be.

Now, Jane, let's move on to an issue that you've already raised, which is around kind of quality of care. You know, there have been so many challenging reviews, revelations about care for people with learning disabilities. The statistics are pretty bleak still in terms of premature mortality, in terms of levels of sickness. I know it's just I think a few days ago there was the latest report produced by King's College on the avoidable deaths for people with learning disabilities.

And although there was some good news in that, there are still some really big challenges. Where do you think we are on that journey to try to address inequalities in quality of care for people with learning disabilities? 

Jane Padmore

I think that we are making progress, but not fast enough. That would be my overarching summary of it. I think that we're reducing the number of people with a learning disability who are in hospital, but we have significant numbers across the country of people who are medically ready for discharge, but there aren't appropriate community settings and support in the community for them.

I think that it would be complacent to think that some of the reviews that have shown really horrific treatment of people other than its ability doesn't happen elsewhere. I think we need to alert to it everywhere and we need to proactively search it out and ensure that people feel able to speak up and that we listen. And we not only listen, but we respond.

I think it's great that it's on the agenda more and people are talking about it more. On the side of things in relation to physical healthcare, I read the Leader Report every year and I think I can see some progress, but I get slightly disheartened when I read it and I asked the question in a meeting the other day, whether people within the acute trust knew how many people on their cardiac waiting list for instance, or they’re on their list for diabetes had a learning disability and whether they were prioritised as someone with a protected characteristic or prioritised due to the increase in deaths in that group.

And they weren't able to even tell me whether the numbers of people on their lists with learning disability. So if we don't know the numbers, how do we know we're addressing those things? 

So I think we're making progress. I'm so pleased that we've got the Oliver McGowan training and certainly in our system it's mandated for everyone.

And I'm really hearing in meetings now people starting to talk about it more. And that conversation is where it starts because people have to feel that it's important. They have to understand why it's important rather than just a KPI - yes, tick, we've done it - they need to really feel that it's important. So my overarching view is that we are making progress, but it's not as quick as I would like it to be.

Matthew Taylor

And do you think when it comes to the wider workforce, do you think it's about compassion or do you think it's about confidence in the sense that do you think that people who haven't had specialist training in working with people learning disabilities lack the confidence to know how to work with those people when they meet them in care settings?

Jane Padmore

So I'm not sure about confidence. And what came to mind when you said that was - during the pandemic, I looked at a number of people who were open to our services, who had died of covid, and I think at that point it was quite early on in the pandemic, 12 people with a learning disability had died and none of them had a DNA, CPR, but none of them had been referred to ITU and had gone down the normal pathways. 

And it wasn't a complacency, and it wasn't a lack of knowledge that this was important. It was, I think that it just wasn't thought about and wasn't a priority. So I think that it's that sometimes I think until it's really pushed - services, all services are really, really busy and have their own priorities to meet various targets and to meet demand coming in.

And then you add learning disability to that, and that could feel like another thing to think about. So you need to win the hearts and minds as to why it's important. And that sort of sense of justice for these people, that it's really important.

As soon as I started talking about those people that had died - within the system I was working in at that time - the chief nurses got on board, the local system got on board, and said, this is not right. And they actually came up with new ways of working. And they had a serious incident and they asked - I work to the fantastic disability nurse in Hertfordshire who went and did an independent review for them and to raise the profile.

So I think it's partly busyness. I think it's a lack of knowledge. I think it's we need to get people passionate about this - at all levels. And really speaking of being advocates for people with learning disability. 

Matthew Taylor

So Jane, one of the things about me being a complete generalist and having moved into health relatively recently is I'm allowed to ask really stupid questions and you have to forgive me.

So we often talk about learning disability and autism as a single phrase, but I'm kind of interested in in some ways we look at the statistics, they're going in a different direction. So for people who are classified as having learning disabilities, people classified as having autism, and of course often those two things go together - how should we think about learning disability and autism as categories? 

Do we do we need to, in your view, be clearer about the differences that are involved in relation to providing care for people with those different kind of classifications/diagnoses? Or do you think that in a sense the issues generally are very common between them? 

Jane Padmore

I know that this is quite a hot topic as well, and I have a personal view and I think we should disaggregate learning disability from autism. I think you can have a learning disability with autism and you can have autism without learning disability and learning disability without autism. And they are different and they have different needs. So when I look at our mental health population and our inpatient services, there is a large population with mental health problems and autism in our inpatient services. And we have people with learning disabilities with autism, and their needs are very different, and we have people who are autistic that don't have a mental health problem and don't have learning disability. 

And I think conflating the two does a disservice to those people with autism. I think autism is fascinating because when I look at my career - I worked in CAMHS for a long time - when I look back on it now, some of the people we treated - who were emotionally deregulated and had quite significant behaviours that challenged us - I can look at them now and think they were clearly autistic, but we didn't frame it as that then. And I think the research into autism is relatively new and emerging and the health service has not caught up with that yet.

So we're getting all this evidence about co-morbid physical challenges with autism, the sensory needs of people with autism, autism and the ADHD and vitamin D as another part of neurodiversity. There are all these things emerging in the evidence, but the way the services are designed, the way they are compartmentalised in different departments, doesn't fit what the research and the evidence says is emerging at the moment.

So I would disaggregate the two. I have a very neurodiversity area of work that we're considering that includes ADHD, autism and the full spectrum of neurodiversity that is different from learning disability. 

Matthew Taylor

Now, that's really interesting, Jane. And you talked about neurodiversity. Now let me suggest a kind of hypothesis to you on this, which is that if one talks about mental health, I think when I talk to professionals, they talk about two kind of slightly conflicting feelings about the changes in the way in which we think about mental health.

So one is welcoming the fact that the stigma has gone around mental health and that so many more people are willing to talk about mental health challenges. And a kind of recognition that mental health is an issue for all of us, not just for a small number of people who might be stigmatised as mentally ill in a way that kind of existed when I was kind of growing up.

But on the flip side of that is a slight concern that we fail to distinguish between what you need to do if you're suffering from, I don't know what one might call and I don't want to belittle this when I say it in these terms, but what one might call kind of everyday unhappiness with mental illness and again, a recognition that you whilst for the latter group, you need clinical interventions for people who are suffering from, you know, very unpleasant feelings of unhappiness or anxiety, but that feelings that most people have at some time, that the interventions you need probably aren't clinical.

It's to do with wider society, it's to do with the support you can get from friends and all sorts of activities. Is there something parallel here in relation to learning disability? Which is on the one hand it's really great that more people are talking about neurodiversity, recognising that we all have many, many more people than we might have thought, have challenges in terms of the way in which they learn, the way in which they cope with everyday life because of the way in which, as it were, they're wired.

But also there is a challenge which is recognising that we can only realistically provide clinical care for people who will have more pronounced forms of learning disability. 

Jane Padmore

It's a very controversial area, isn't it? So, I agree that we're at two risk of over medicalisation of neurodiversity and people who are neurodivergent, and it's much like the medicalisation of people with a learning disability. You know, if we think historically you had a learning disability, were put into an asylum and over time we've said actually your part of the community, you have a learning disability, but you're entitled to a life much like everybody else. You might need additional support, or you might need a reasonable adjustment. And I think the same is right for neurodiversity.

There's a spectrum of people who are neurodivergent who need just reasonable adjustments in everyday life to be able to cope and to be able to function and to have a fulfilling life. But there are people whose neurodiversity causes some challenges for them that mean they have mental health problems. And I think that's where we should be focusing the health service as opposed to the wider support services.

I think we would be careful not to put everything into health and that what's come to my mind is and I really struggle with this, it's the mental health and wellbeing. We all need mental health and wellbeing. But tin CAMHS, what happens is everything to do with mental health and wellbeing is seen as tier three CAMHS.

So if I get contacted by education or members of parliament and it's anything to do with mental health and wellbeing, then immediately think everybody needs tier three CAMHS. I think what we need to be developing for neurodiversity, is communities that are neurodiverse-friendly and neurodiverse-accepting. 

And I think I think it's in Derby they've started that across all sectors. That whether or not you have a diagnosis, you are able to receive services that are reasonably adjusted for people who are neurodiverse. I'm not sure I've given a very coherent answer because I think it's something that I'm still forming my ideas about. And it's also complicated by the fact that one of my children is autistic and deaf and on the spectrum. And so I've been through a lot of these services myself. 

Matthew Taylor

Yeah. So I think, Jane, it's just something that we need to try to talk about in an honest and open and compassionate way. Because - well you'll know this is a parent - part of the challenge is that the system incentivises people to get a label because it's only by getting a label that you can get services.

And also you know, in the workplace, if you have a protected characteristic, you have certain protections. So there are kind of incentives that encourage people to want that label and then that can create challenges in terms of, however well we resource things, there's a limit to the amount of provision that we can ever make.

In the end, whatever we might want to say, we always have to ration the health and care resources that we've got to people whose needs are greater. So I think the important thing, Jane, is to just try to talk about this openly and to recognise that there are no kind of easy answers to a kind of avoid polarised positions.

Jane Padmore

I completely agree. And I think one of the things I was struggling with my answer is the use of language, because I know being part of that community, language is really important, but you have very polarised views as to what we use as language. My child would definitely say he is not disabled, he is autistic, and this is the way his brain works.

It's different from other people's. But he is not he is not disabled. But I know there's a large cohort of people in the neurodiverse community who really take offense to not being called disabled. And I think those labels are really important and the language we use is really important, but we also need to appreciate other views and be open to other opinions.

Matthew Taylor

Yeah, look, Jane, I completely agree. And I think that there's a relationship between the first and second half of our conversations here, because if we want people to work in learning disability and mental health, and if you want the general workforce in health and care to feel confident in engaging with people with learning disabilities and mental health issues, we don't want to be in a situation where they're worried that if they use the wrong word, they're going to get into trouble.

So we want an open and compassionate debate. We want to listen to people, and listen to how people want themselves to be described. But to try to do that in a way that doesn't lead people to be fearful and to worry that they're going to put their foot in it, you know, do something that's going to kind of rebound on them. So that's why these kind of conversations, I think, are so important. 

Can we just turn to one other area before we finish, which is around kind of rights, really. We were obviously at the Confed very disappointed about the Mental Health Act not being in The King's Speech. There are specific issues around people in long-term seclusion. Is there more work that we still need to do in relation to the rights of people with learning disabilities and mental health?

Jane Padmore

I think there is and I think I was disappointed the mental health that wasn't in The King's Speech, but I do think that a lot of work is needed before any changes to the Mental Health Act can take place. Because although I think the changes are right, we’re setting ourselves up for failure if we don't get the changes that are in the paper around the duty of commissioners to provide adequate community services so that people aren't detained under to the Mental Health Act. We know we've got a significant number of people who have a medically medicated discharge and have been for significant periods of time.

So that community provision isn't there at the moment and the money isn't there to develop it. And the workforce isn't there to develop it. And there's a risk that if that isn't in place before the act comes in, these people again will end up in the criminal justice system. And that's something we really don't want to happen. 

So I think the delays, the mental health that are disappointing. But what is in there is really important, but it needs the prep beforehand.

Matthew Taylor

Last question, Jane. You’re chair of the Mental Health Network Learning Disability Forum. Now as an organisation, we at the Confed want to encourage our members to be challenging to each other. We say to the centre, to the department, to NHS England that we want them to be more strategic, to try to resist the temptation towards micro-management.

We want to do something about the kind of terrible overkill of kind of regulation that exists in the health service. But to do that, we've also got to be really robust in driving quality improvement on a kind of peer-to-peer basis by creating challenging communities of leaders who look at the data and are willing to learn from each other.

So in your role chairing the Learning Disability Forum, what do you think are the things that leaders could do better? Where are the kind of biggest variations where you think there is a real scope for leaders to be doing better themselves? 

Jane Padmore

There are two areas that come to mind immediately, and that is what we hear in the network are lots of pockets of excellent practice.

But they are pockets, and I'm not sure we’re sharing widely the learning and measuring it and then spreading it to other places in a consistent way across the country. I do take your point around the regulations and reporting, but I do worry that we have very few reported metrics for people with learning disabilities and autism, which means it gets lost in the conversations about urgent and emergency pathway.

So I think there's scope for having some sensible measures that really bring to life those things. I think we've started to see it with looking at the number of people in beds. So that's really positive. But I think that the issue of really spreading that learning and being vocal about it and getting it published and it's something that we could do a lot better on.

I think the other area we could do a lot better in is hearing the voice of people with lived experience consistently. Again, I see pockets of it, and there are some fantastic voluntary sector organisations that come and work with us in the NHS and support a meaningful approach to co-production. Both people with learning disability and their families and carers.

So I think those are the areas that I think we really need to build on. And then there's the sort of more policy side of things and the Mental Health Act. So it's been really helpful as a network to come together with our thinking around the Mental Health Act and thinking around our workforce of the future, and sharing examples of how we can really influence those agendas.

Matthew Taylor

Yes. And also I think making sure the Learning Disability Forum influences the rest of the system. You know, we're proud to be the organisation that represents the 42 integrated care systems, but making sure that those systems prioritise learning disability, but also recognise that when it comes to the area of prevention, for example, that if you can work more effectively and empower people with learning disabilities and their carers, actually there is scope there to be more efficient in our use of resources.

So this is of course about compassion, it's about rights. But it's also about being productive and effective.

Jane, it's been fantastic to talk with you. Really looking forward to working with you through the Learning Disability Forum and the Mental Health Network. Thank you for giving us your time. 

Jane Padmore

Thank you for listening to me.

Mathew Taylor

And thank you all for listening to Health On The Line and I look forward to speaking to you when our next episode goes up. Goodbye.