TRANSCRIPT

Welcome to ReCoCo and Housekeeping: Alisdair Cameron, ReCoCo Co-Director

Introduction to artED, The Thing, panel members and the ‘Joined up thinking’ talk programme: Grainne Sweeney

Mindfulness body exercise: Helen Shaddock 

Reading from The Thing ‘Write-off day: Barbara Trevitt 

Panel Discussion

Alisdair Cameron, Anne Fry, Claire Murphy-Morgan, Fiona Granger

HELEN

So when I was thinking about developing this event program, I was very conscious that I want to instigate change. I want for my experiences to be used in a positive way, and I want to share my experience with others who have their own experiences. I have been blessed by working with some amazing individuals and organizations, and I brought together a wonderful panel of people that today, I’m really pleased, will be sharing their own knowledge and experiences. I’d like to also acknowledge the experiences in the audience, and at the end, there’ll be plenty of time for questions and for you to give the voice your own thoughts, comments, questions, etc. So please, this is a space to share things, and I hope that you feel welcome to do so I’d like just to before I pose a question to the panel, I’d like just to give a quote from Alisdair. Alisdair wrote an amazing letter of support from me when I was applying to the Arts Council for funding to fund this project, and I was just really struck by this paragraph, so hopefully, Alisdair, I’ll do it justice. In Alisdair’s words,

Everything we do is guided, steered and delivered by people with direct lived experience of distress and complex needs. That said, we are reluctant to talk in terms of their complex needs, because when people relate their stories, they aren’t complex, but very understandable with intersecting factors. The complexity arises with the traditional systems response to people, the stigma and baggage that is attached to certain labels or diagnoses and the tendency to deal with problems singly and in a linear fashion.

So, with that in mind, given your wealth of individual experiences of working within the health system, within different capacities, I’d like to pose this question, if we lived in an ideal world and you could make any intervention or change within the healthcare system, what would you do? Money is no object.

ANNE

So I was thinking about this, and you did say it didn’t have to be realistic. Yeah, that’s good, because I was thinking about the sorts of things that occupy a lot of our time and thoughts and discussions, and it’s around eligibility criteria. And I think if I was to design a system the basis would be, do you, with your expertise of your life, feel like you need support?  

I think when we talk about the system, as much as our organization is a part of it, we know that there’s gap, and that’s why we’d like the removal of all eligibility criteria.

HELEN

The Body Mass Index is one example. Currently, a lot of access to support for eating distress depends on what your BMI or body mass index is. So, to access certain support, you need to have a BMI of below a certain range. Now, some people with eating distress do not have a low BMI and therefore would try to access support but not be able to get it. One of the reasons why I like to use the term eating distress is because it I feel as though it includes people who have, for example, binge eating or ARFID or anorexia or bulimia. All come under the term of eating distress.

So in in my life, I’ve faced barriers to accessing support, because I haven’t been of a suitable BMI, and I find it really distressing that someone would have to become so ill to, in effect, get their body to an unhealthy weight to then be able to access services. I feel as though the sooner that we are able to pinpoint that someone is in distress with eating, the better able they are to be able to challenge that, because they’ve not gone to a level where their brain is packing in, which makes it harder to recover, basically,

ANNE

And it’s a recognition of all that it’s taken for that individual to get to that point of saying, I think I need help. We know that that is incredibly difficult and appreciate the many steps that you need to get to be able to ask for help, and then to not find us, it can be devastating. We use eating distress rather than eating disorder as we are non-clinical. So, we don’t have nursing staff, but offer therapeutic services and peer support. Often our support is about your relationship with your body, and we try and keep it as broad as we can. And we are able to do that because we’re not entirely commissioned, so we’ve got some flexibility.

CLAIRE

That’s really interesting. In the research that we’ve been doing over the last sort of two to three years, we’ve learned as researchers about the relationship between the terminology, eating disorders and eating distress, and the majority of research participants that we’ve come into contact with have come under the umbrella of they would often talk about, well, eating distress. Participants commented that they can’t access clinical support. There was one participant who said, I can’t access it. I’ve been bounced around every service because the services exist in a silo. And I think if money was no object, I think [my wish for support services] would be about being very person focused, the holistic, all round approach for that person and what’s important for them, and the kind of the flexibility of care. So, we work in looking at what the online space has been like for people. It has been very mixed, but for some people, online support is very flexible. It’s helpful for others. It’s not appropriate, it’s not what they want. I think if money was no objective [people would have a choice]. It would be a hybrid approach as well. Do you want a mixture of online and in person support? Do you just want in person support? So, it would be a holistic.

HELEN

I do think, in my experience, that is very much becoming a lot better within the NHS. And I am encouraged to see that in my lifespan, there’s a lot more person-centred approach going on. And well, Fiona, I feel is that our relationship is very much like that. In fact, it’s through the improvements that are being made, more recently that I’ve been diagnosed with autism. As soon as I found that out, changes are being made where we have adapted to suit my sensory needs. Now we don’t have fluorescent lights on when we meet. You know, simple little things like that. Having an occupational therapist, come to my home was an absolute revelation, and potentially highlighted behaviours that I wasn’t displaying in a clinical setting, which then helped me be able to get the diagnosis of autism, which now is enabling me to get help make better use of the help that I have been given. So I really think that there is great improvements, and you see that?

FIONA

Yeah, we are getting a lot better with it. But, if we had all the money in the world we could change a lot of it. One of the things we keep seeing and we keep getting stuck on is we have a postcode lottery. And I do think in the North East, we are a little bit better off. I’m not saying we’re perfect at all. We’ve still got a lot of flaws, but there are so many places where just because of where you live, you just don’t get anything, or you end up on a three year waiting list to have very little support with not much option of what your support looks like. We are seeing a lot of it, where you’re living can drastically change what you get, and that would, that would be wonderful to change. I think it’s working on what we’ve already got and just making it better because actually, we have got quite a bit up here, which is great.

ALISDAIR

I think there’s all sorts of issues with the way that some well-meaning initiatives and well-meaning terminology then gets kind of ossified or verified into something which isn’t solid. So, we’ve got the kind of tyranny of diagnosis, and only when diagnosis will be dealt with at the time, which is, which is an issue. And you know, but also, like 90% of people come here, 99 come here with treatment teams or whatever. Yes, there’s a mental health diagnosis of some sort or other in there, but those themselves, there’s a high degree of subjectivity in there, but there’s always other stuff. There’s a load of other stuff. And it could be, you know, could be neurodiversity or other diagnoses could be given. Alcohol issues could be, poverty could be, all sorts of social things. So it’s kind of realizing that, okay, you’ve got a service set up for problem A, but you’re ignoring B, C, D, E and S, which all come into play. So multi morbidity is normal, really, that’s what we’re seeing. And that then has a knock on effect with when you start talking about notions in recovery, etc, because it’s a contested word, I mean it’s in our organization’s full name, but in a way, I kind of want to check us in using the word, because for some services, recovery means you’re no longer draining their resources and we don’t need to see [them]. But in the government’s eyes, recovery really means getting back to becoming a productive economic unit. [We should] actually start thinking about recovery really just living the best like you can given your history and circumstances, okay? And there are all these social determinants, which the NHS seems to give a bit of a blind eye to. Sometimes it talks about it, but, you know, equality is basically the best therapy.

I think there are issues around the NHS culture, and the NHS identity, because it was set up principally for physical health problems, principally for procedural care. So it’s like kind of, you’ve got layers of marginalization and being a bit far removed from the core approach and business of the cultural outlook of the NHS, which is very transactional. It’s not relational. [We actually need to look] at what it is that keeps people ill? Well, there’s lots of talk about prevention, but there’s very little talk about maintaining people or stopping them going backwards. It’s like, either we prevent things or cure them. But what about stuff that keeps people ticking along, and if we have more resources in terms of support, that just it’s a bit like, a bit like a safety net. If you’re walking the tight rope, you don’t aim to use the safety net all the time, but the safety net, it gives you the confidence to walk the tight road. Yeah, so it’s having those things which are there just to maintain your career back and allow you to then float and get on your own.

ANNE

Universal basic income would be a good place to start in terms of maintaining a good life. That security blanket that if you need it, you don’t have to go to rock bottom.

[As a charity] I think a fundamental part of our job is to act as a critical friend and to sit always on the outside of that system explaining where it’s not working, and it’s done very well, because I am accountable for funders, but I’m accountable to the people who use services. That’s where we have to justify ourselves to and what we’re doing and how we’re doing it. So there’s always that push. There should always be a pushback from charities, in my opinion. I think there are structures that exist. I don’t think that they work particularly well. I think it depends, unfortunately, how good you are at getting into the right conversations and the right meetings. And I think, I think there’s a lot of really positive messages coming up from the NHS, certainly regionally, about the value of the sector.

HELEN

How has social prescribing affected you?

ANNE

It’s a really good idea. Like, you know, Alisdair said there are social determinants of health. Like, we know loneliness, we know poverty, we know poor housing, all impact on mental and physical health. So social describing makes total sense. Where it falls down, is how the money flows through the systems. So social prescribing creates longer waiting lists for our services, but we don’t necessarily get any more resources to deliver those services. So I think it’s a perfectly great idea. It’s just, it’s just not been implemented particularly with thought for how the money flows.

ALISDAIR

I’d agree completely with that. You can’t argue with it in principle. But what we’ve ended up with is an architecture for social prescribing, which is, it’s skewed, it’s imbalanced. If the goal is for the patient to be going to do this activity, because it’s good for them, the key is to make sure that activity is happening. So you fund the activity before you fund the Navigator.

HELEN

Claire could you explain a bit about your research findings

CLAIRE

So basically, I mean, we sit in a sort of a slightly different space, because the focus of our research is, is about what online or remote support for eating disorders and eating distress people are able to access, or indeed choose to access online. It’s a very mixed picture. Now, I was really struck by talking about postcode lottery, because [during covid] charities across the UK said that effectively they had to scramble literally overnight during lockdown to make services that were always in person, available online. This was a huge capacity change from the point of view of their staff, but also obviously the people coming to that service. So there were a number of different things.

There was one service provider from an eating disorders charity who said, obviously, before covid, they would have never thought about it going online, which is particularly. We want some people physically in person, but now all that hard work has been done, we do find that [online support] is something that for some people [is beneficial]: it’s flexible, it’s convenient. A lot of people stuck in a rural setting don’t have access to transport. Well, it’s an it’s an all or nothing. It’s actually a lifeline for them. The disadvantages we found or challenges, I should say, is that whilst people said yes, there was a value and online support, if they’re well enough to access it, digital literacy is a massive issue. Like “I’ve never used before. How do I do this? How do I access when you know there’s limited device in our house, we’ve got one laptop between us.” Confidentiality was a huge issue, and maintaining that therapeutic space at home. So most people said to us that there was a value in online support, but absolutely not at the expense of having in person support, and that it should be more about choice and widening of choice and flexibility. But there were all of those people who chose to still continue to access support, or some of their support online, there needed to be more support about accessing it? [Questions such as “I’ve been given a meeting on teams. How on earth do I use teams, and what’s going to happen if the internet goes down? I’m in a really good moment in my session with my clinician or my therapist, and suddenly the internet goes down. How do I manage that? How do I navigate that?” And likewise, for service providers as well. “How do we have that conversation with people when we’re running around seeing a million people every day and we don’t have time to sit and do training set?”

One of the things that we’ve done with research participants is we’ve become a co design team for an online toolkit to get the most out of that online support experience. And Helen is one of our CO designers, and as well. So to be able to kind of design that, hopefully that will be accessible as a tool to a wide range of people, so we’ve got that as a tool. I think, I hope that hasn’t gone completely off tangent, but that’s what people have told us about, about our design, about the kind of, the sort of support that they want to see.

I think there’s a real fear amongst a lot of our research participants that we spoke to, particularly people who were accessing support, that it’s all going to go digital because it’s cheaper, so all of the in person support, unless you’re really ill, was just going to go, and there was a real fear that that was going to happen. So I think we need to be really clear within the RHED-C project that this is a set of options for people, and it should be part of choice, a wider choice about being seen in person or being seen online, or a combination of the two. So and whilst there is that there’s a number of great things about online support, it should be part of a wider, holistic template of choice for people.

HELEN

There will be organizations that [online services] are absolutely not for them. Some organisations operate a soley in person service and that’s fine. You know, as long as there’s equally places that are able to do online support. I get it from both perspectives.

Fiona, how did you feel about moving to online support when you were so used to operating face-to-face?

FIONA

I was working in the community at that point, and we were classed as those, that little group of people that were kind of told, actually, not much can change, because you’ve got to see these people, kind of in person. And so I was lucky enough that it meant I could still stick to my way.

HELEN

At times, online support was and is helpful. Like, for instance, if I have to go down to my parents, in effect, that would mean that I wouldn’t be able to have an appointment with you, because I’m not physically there.

Christmas time, for example, is a well known time of year that that is really hard for people with eating distress. And often you move away from your home to go to family, you know, a different location, which means then you can’t access the support, which actually might be at a time when you most need it. So for that instance, having the ability to access online support with your therapist is brilliant, because it fits a need then it might not be ideal but it’s definitely better than nothing.

CLAIRE

There are a couple of things I think, that service providers have fed back to us in our research, kind of linking in with that is the benefits of online support in terms of being able to have a team meeting with a range of different services that might be supporting somebody is a lot easier now. Trying to physically get everybody in a room, even within like a hospital setting, could be really tricky.

I guess another thing that this wasn’t something was directly fed back to us, but something that I kind of picked up is there were service providers who said, what was also good about online support during and beyond covid lockdown is that their capacity increased to be able to see more people if it was online.

But then my what I’m hearing is that there’s a huge burden on those service providers in terms of staff care. Staff burnout [could be the result of] having to see more people.

HELEN

Certainly, regardless of mental health, healthcare. In the pandemic, you know, there was that recognized thing of Zoom burnout. So I can imagine that would be even worse when doing a number of therapy sessions.

ANNE

We do online groups and in person. And I think, like, think it depends on the life environment, doesn’t it for staff. So you shouldn’t be seeing more people online than you would person, and you should still have the same levels of care for you, the people that work for you, in terms of breaks and their own clinical supervision and their own self care and peer support and all of that stuff is exactly the same.

ALISDAIR

We had to rapidly develop our online offering, but a lot of people are digitally excluded. So instantly, that was problematic. It did mean that some people that previously couldn’t, access this could. But I think there still is a net loss. We secured this building which meant that we were allowed to open again for in person stuff, a lot earlier than other people. Because of this sheer space, you could do lots of stuff with very adequate spacing. You could even do groups.

I think, from a ReCoCo point of view, we probably are deficient these days in our digital offering. It requires quite a lot of investment.

I definitely think the NHS is driving digital first as a strategy. But I think you know that is probably to do a cost saving as much as to do this is opening up opportunities. And it is, you know, some ways it is more efficient, but definitely the digital exclusion is a massive, massive issue in healthcare. I think there’s lots of people who are now basically denied healthcare because they’re not digitally included, or their access to digital is sporadic, which is as an agenda that’s a little bit troubling,

HELEN

I’d like to open it out to the floor. Does anyone have any questions or comments or anything that you’d like to add into the mix?

QUESTION 1

I was just listening for how to all of this. And I was thinking about how, in some ways, my own experience of having been to a Sen school, but also been through various forms of counselling, various forms of therapy, and also thinking about how there have been moments where I have needed to be in a sitting position with somebody to talk about really sensitive issues. But then to have also been moments where I have felt like I have counseled counselors, like actually had I had an experience where, basically, I asked the counselor how they were doing.

I was also thinking about how there is more radical movements about care movements amongst friendship groups, similar to how the AIDS crisis back in the 80s had basically needed to develop those radical care movements. I’m thinking about the sort of dangers that comes from those care groups, like the dangers of burnout amongst friends, supporting other friends, the dangers of potential, giving misinformation, even with great with good intention. And I wonder what your thoughts are around those sort of issues of when services are so limited and those situations of social care amongst friendship groups have to develop.

HELEN (to panel)

It might be appropriate to talk about the group work you do and the success of this.

ANNE

So the thing that you said there about resources is really interesting, because I think that’s, that’s the starting point, right? The eligibility criteria. The eligibility criteria is only there because the resources are limited. So it’s like starting from a place of, we haven’t got a lot of where are we going to put it? And so the parameters get narrower and narrower, so that they can, they can focus on the most acute, acute in that sort of definition and measurement needs. So going back to the thing around if money was no object, like if we lived in a society that invested in health and care and well being, those resources would be greater. So the eligibility criteria would be broader naturally, but I think, yeah, I mean the burnout and the reliance on, I think peer support is very powerful. What we do is  facilitated. So there is somebody there who’s a member of staff who is just there to create the space, really, and make people feel comfortable sharing, but it’s very much about what happens between the participants and the people who come together. I think it can be hard to be able to look after yourself in those environments and know where your own boundaries are and where you need to maybe to maybe withdraw for your own, for your own sort of, for your own self care. But I think, I think ReCoCo’s model around facilitators and volunteers is actually more interesting

ALISDAIR

So we’ve got people who come along and they’ll do lots of courses, some skills in x, y and z, that could be helpful. Some step up, do a bit of volunteering, and then we’ve got another stage – therapeutic behavior, where people get paid real living wage for doing maybe five hours of work. And then there’s a number of them, they get full time employment with us, so a lot of them then go on to work full time for the Mental Health Trust. So I’m actually, I’m very keen that people don’t define themselves by some diagnosis that may have been given in the past. But the key in all of those stages is degree of supervision boundaries, because peer support should never go beyond its competencies, or not go beyond their knowledge base in supporting others, and be upfront and acknowledge that.

So an awful lot of people work in mental health services as clinicians or practitioners, etc, who themselves have lived experience. They’ve got their own knowledge, but they’re often inhibited or deterred from getting that into their practice. And it makes sense, if you think about it, because what’s the driver for people that work in their life? Often it’s either their own, something that’s happened to them, some experience that they themselves have had, or someone close to quite common drives people to get involved. So you’ve got, you do have a goodly number of people who they can offer both.

They’ve both got clinical expertise and that work knowledge, but they also have expertise in the lived experience as well. And then you bring that back, I think that’s an untapped resource that really isn’t captured, because you know that that requires just a moving of some boundaries that they’re out of custom, not out of necessity. So you’ve got boundaries which are there for safety, you know, you don’t play ball with those but some, there’s some boundaries which are in there out of habit as much as anything, or you don’t talk about yourself. Some circumstances when you can talk about yourself, and that could be of benefit in a given situation.

There’s something about the profession, professionalism in the workforce. The voluntary charity sector is accused of not being for that or partly for that reason. But people who work in the sector generally are there because there’s a personal story behind that, and they talk about that when appropriate and okay to do so. And I think that’s almost using a bit of a stick to beat us with sometimes, because the idea is that we have to be professional and that, and that there’s enough situations which I don’t, don’t think is very helpful. It’s emotional distance, isn’t it, to actually be going like I, as a human being, feel for you, but as a practitioner, or somebody who’s supposed to be doing safeguarding, I need to have emotional distance.

QUESTION 2

Hi. Thank you for all your insights. It’s been really fascinating to kind of hear you pull on your individual experiences. I just was really touched by, I guess, firstly, what was sort of said about maintenance and that brilliant metaphor that you used around about the tightrope and the safety net. And I think so much of maintenance comes back to, particularly in recovery, this idea of having someone, or having some sort of person centered service looking out for you, having that touchstone of that, that person that you can kind of go to, or feeling that you’ve got that point of contact, be it in an individual or a peer support group or a service. And I guess I was just really curious about the RHED-C project and around work that you’ve done, particularly around online facilitation, and whether you could say something about how successful you feel maybe some of those online services or remote services have been and tapping into that more personable interaction. Because, of course, as Fiona said, there’s, there’s some things that obviously just can’t be replicated over that environment. But I’m sort of wondering, or a bit curious, as to the types of strategies that have been used to try and replicate that setting, if it makes sense.

CLAIRE

So it’s been quite mixed. So I think one of the key things has been about trying to maintain the kind of the therapeutic environment remotely. So, for exampleI think, a lot of kind of the work before the online experience is really important that people don’t just feel like they’re given. They have a link to a completely new platform they’ve never used before. And there’s not, there’s not a way to kind of guide them through. And quite a lot of services are really good at kind of providing that free support. But what happens if there’s if somebody’s got an unstable interconnect into that connection? This can even just be something as simple as having a phone call, having a backup phone call in case that just doesn’t work, it can be quite challenging. There have been people who said that they prefer the online experience because they feel more in control of the online experience. But then the challenge there was often around camera settings, and that’s a huge challenge, because obviously, often if you’re in a kind of an online setting, unlike a sort of a normal conversation where you can often see yourself on screen. So that is a huge challenge, but obviously for a lot of counselors and clinicians, particularly the need to physically be able to see somebody. There is the hide self view setting on Zoom, for example. So you don’t have to see yourself, but your clinician can still see you. But interestingly, when we interviewed and surveyed all of our participants, certainly in our one to one interviews, none of our participants who were receiving support were aware of that, hide, self view. So that was a real challenge. So it’s kind of getting the word out there about this is what this platform can do, so that you can not have to see yourself, but the person support you can still see you. The flip side of that is that people were very aware that the online experience and this was people themselves who are receiving support as well as people providing it is that often, particularly for eating disorders and eating distress, the camera setup can sometimes exacerbate some of the secrecy that can be associated with eating disorders or eating distress, which is somebody said, I can put a big cardigan on and say I’m doing great and look candy online, when actually they’re struggling. But there was quite a high level of awareness about that, that was linking into some of the kind of the exacerbation of that kind of secrecy element. So there’s a lot of challenges there. That’s why we’ve co designed the toolkit. So the toolkit itself, is some downloadable resources that can kind of support people through that process. If you are going to go online, how can you get best out of zoom, if it’s a platform you’re going to be using, if you are going to have to deal with the camera setting issue, here’s some feedback that people who’ve been in the same situation to you have told us about how they’ve kind of thought about that, navigated that. So there’s a lot of nuances about online support in particular. And I think whilst there’s a lot of online support, well, that there was online support there, there’s often not the capacity to kind of really go through the know what nuances of what that can look like. So for example, on our toolkit, we’ve got things like just getting in the zone at home, if you’re having an online just like feeling comfortable at home, you know, being in a space where you feel comfortable, do you have, you know, some favorite cushions, or get a hot drink, or just, you know the mood, or how you might kind of help yourself to feel more safe in that sort of environment, just some handy tips for minimizing the potential for the Internet to go down more for you just not to be able to get on, which hopefully will help service providers as well, because often, whilst the service providers, most of you want to have been fantastic and going above and beyond, helping people get online, often, capacity is an issue in terms of being able to provide people with support. So so yes, we’ve got a toolkit designed by service providers and people with lived experience.

QUESTION 3

Thank you for the talk. Your writing that was read. Fantastic.

I just wondered, in terms of whether it is possible for a client to map their own treatment course and their own recovery, as somebody who uses ReCoCo, everybody develops a wrap program.

Is that something you do with your clients so people will have a wellness report reaction plan, where they identify where they’re able to identify the triggers that might lead to seek help or reduce the chances of relapse. That’s a living document, because it’s something that you do.

FIONA

Yeah, that would be, part of that sort of relationship. It’s all about. We try and

support people to understand themselves. What might work for them. And it’s very individualistic. Everybody’s different. So every sort is different. So every recovery is different. So it’s all about understanding how to recognize those and address them in different ways. We don’t use the same plan, but the reaction plan, but we don’t use that as a sort of one model. It’s all about not needing us, yeah.

QUESTION 4

Where are we going historically, with incidents of eating distress and eating disorders, if you look at the last 20 years, are we going up? Are we level? And equally, I wonder, where are we compared to other countries in Europe? Are there things for us to learn in countries where it’s less of an issue? Do we know why it’s less of an issue in other countries? I’m making a huge assumption here that there are other European countries where the incidence of eating distress is much lower.

ANNE

I don’t know about the international comparisons, but in this country, it’s going up in 2022 there was a report from the Royal College of Psychiatrists, hospital admissions for eating disorders had risen 84% in five years, and that that was mostly in children and young people. So yeah, it’s going up. It’s going up in men and boys. So it’s not going the right way. I think that speaks to a broader mental health

We definitely need to be working with children. It needs to start early.

QUESTION 5

What happens if a school’s concerned about a child?

So they would go to statutory services. Within the NHS they have the FREED program, which is identifying an eating disorder earlier on and treating that eating disorder quite quickly with an intensive team. That’s where things are happening at the moment trying to prevent the escalation of an eating disorder or eating distress. It’s about first response.

Thanks

Book sales and informal chat

Ends