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| James (0:09) | You are listening to a podcast from the HealthTrack Research Centre in Brain and Spinal Injury. My name is James Piercy and I've been chatting to all sorts of interesting people about their work with brain injury and today I'm joined by Jennie Morrell from Headway Essex. Thanks for coming on the podcast Jennie, it's nice to meet you. | |
| Jennie (0:28) | Nice to meet you too, thanks for having me. | |
| James (0:30) | I thought we should get Headway Essex in because you are celebrating a birthday this year, 2026. How many years has Headway Essex been running? | |
| Jennie (0:39) | Yeah we are celebrating a big birthday, so we've been running 40 years now, so we're stretching it out as long as we possibly can to celebrate our 40th birthday. | |
| James (0:48) | Fantastic, yeah so 40 or something and that's 1986. I'm thinking I'm at high school, I'm in Essex in fact, I'm at school in Colchester and that is where one of your offices is based, am I right? | |
| Jennie (1:00) | Yeah so that's where we started out back in the day, so it was actually 1985, so we are prolonging it a little bit, so we're in our 40th year, so we're celebrating that and yeah we started out in Colchester originally, so it actually came about by a gentleman named John was playing football when he sustained a quite serious traumatic brain injury and he and his wife Sarah quite quickly realised that there's a real lack of support at that time for people with acquired brain injury and they then sort of set out and put all their efforts into changing that which is really, really impressive. So they actually just started out with a support group originally which actually had around 40 attendees, so it just goes to show for a first support group, that's quite significant isn't it? And yeah it all kind of went from there really, so they started that out under the kind of umbrella of Headway UK at the time and they actually started it out rather than Headway Essex, we started as Colchester and North East Essex Headway, which then kind of changed around the year 2000, that then changed to Headway Essex as we started to expand our reach across the county. | |
| James (2:15) | Yeah things start to kind of evolve, so presumably John was fundraising in his early days and clearly there's a need if 40 people are rolling up right, people are crying out. | |
| Jennie (2:26) | Yeah absolutely, so from what I understand they did a lot of campaigning, a lot of raising awareness and they worked with some of the team at the local hospital to really push that for funding and to start up the services, so it wasn't until a couple of years later that we then started to lease the building that we're in now, so that was in 1987-ish, so we then had a two-bedroom bungalow on the Severalls Hospital site and we started out a day centre which was running for two days a week with part-time staff and volunteers, so yeah it's kind of significantly grown since then, so if we kind of do a bit of a comparison between then and now, we now own that building which is really exciting, so that actually happened during quite a low stage of the lockdown, so that was a funny time for us because although we had to close all of our face-to-face services, we actually grew as an organisation which is absolutely incredible. We ran everything virtually but within that time we brought our building and we were able to kind of expand and do everything that we really wanted at that point and we also started to explore our services in South Essex as well and our day services there, so yeah lockdown was a real kind of pivotal moment for us and we took the positive from a really bad situation. | |
| James (3:51) | Yeah, it must be great to have that security that you get from knowing that's your place, right? | |
| Jennie (3:57) | Absolutely, yeah and it kind of leads us on to current day where we're really excited to start our build of our new wellbeing hubs, so it's going to be sort of an extension of what we've already got on our lovely grounds and we're going to kind of create an accessible gym space as part of that which we're very very excited about. It's been a long time coming but we're also going to have some multi-purpose rooms, so we'll have a room that can be used for things like education programmes or meetings, board meetings, things like that and then some smaller spaces that might be appropriate for things like counselling services or just that small safer space that people need sometimes, but in order to do that we had to own the land, we had to own the building and it's all kind of taken from there which is, yeah, really exciting and being able to really maximise the use of our grounds because anyone who's ever been to us will know that we really do have a beautiful site and we're so lucky to have it.It's very quiet, very peaceful, so being able to maximise the use of the grounds and create some maybe some outdoor exercise areas, some quiet relaxation yoga spaces, but also really looking to kind of getting into the nature side of things and the wild and making sure we're looking after the environment in that as well. | |
| James (5:23) | Fantastic, so it seems like you've got this huge resource, fantastic things happening and I'm guessing that you're still doing the sort of stuff that they were doing 40 years ago, little kind of support groups and people coming together to share their experience because that's really valuable, but also offering a whole range of other different kind of almost physiotherapy I guess and counselling and stuff. | |
| Jennie (5:42) | Yeah, there's so much, so when you think about it, it's actually been quite nice to reflect on it really in preparation for today to be able to share this information with you, but when you think back to 1985 when it started out with one support group and you kind of fast forward to now, we have 13 support groups across Essex a month, which is quite a comparison to that one that it started out with, and those support groups include obviously the groups for the person with the experience of brain injury as well as their loved ones and carers, but we also offer specific carer support groups, so offer that safe space just for them, but also men-only groups, so we've got our group in Colchester which we call our Men Motivating Men group.We brought that group around because of the stigma around men's mental health and being able to share and open up and that's really taken off well, and then we also have a Young Circle group in South Essex, so that's for people with acquired brain injury between the ages of 18 and 40. They're on a very different sort of pathway in life, they might not have been able to experience those first, so those may be learning to drive and moving out for the first time and getting into a career, so it's a completely different mindset and looking at those vocational skills and those daily living skills as well. | |
| James (7:03) | Quite different goals for those young people, who want to move forward. You mentioned South Essex, so you've got the big site in Colchester and down in Benfleet towards the south of the county. Are you offering a whole similar range of services in South Essex as well as the similar ones in Colchester? | |
| Jennie (7:20) | Yeah, definitely, so we have a day centre in both of our hubs, so we have a day centre in Colchester and a day centre in Benfleet in South Essex. The day centre in Benfleet started out in 2022, at the beginning of that year, and we just started out with a one-day-a-week service and we just grew when there was the need and it turned out there was a real big need for that, so we actually opened another day every six months and within a couple of years we were a four-day-a-week service and that's how that sits at the moment and it is absolutely brilliant, the growth there, but prior to that we did offer those community support services in South Essex for a long time as well, yeah. | |
| James (8:01) | Yeah, and you also, you mentioned kind of support for families and carers as well, which is really important and often it's difficult for families to access those kind of things because there's no money for them, they're not the patient, right, but then you get quite a lot of people really interested in getting that support, that peer support, even if nothing else. | |
| Jennie (8:22) | Yeah, absolutely, and just that knowledge and that information and guidance and sometimes just reassurance that they're doing the right thing. We often run sessions around that kind of rehab versus therapy and showing that even just those simple choices at home every day are a really essential part of that rehabilitation, so yeah, we do offer support groups that are specific to the carers and relatives, we run them in each of our areas in Colchester and Benfleet. We also have recently introduced a carers group therapy session, which is amazing, it's run by one of our volunteers who is a clinical psychologist, so we're really lucky to have her on board running that, but we've recently in the last couple of years also introduced a five-week education programme for carers, so that's, funnily enough, linking on to what you just said about them being forgotten, our programme is actually called the Don't Forget About Me programme, so it's really highlighting that they play that essential part in that rehabilitation and that their lives are turned upside down just as much as everybody else's, if not more actually, in that moment, especially in those acute stages, so those five-week programmes really focus on potentially the change of role that they might not have chosen to take, the emotional consequences of that, but also that kind of resilience and what can I do, what can I, how do I look after myself in this moment, as well as my loved ones, so those services have been so important and I'll never forget one of our carers once we made the initial phone call out to her and we said, how are you, how are you coping, how are you managing, and immediately she started talking about her loved one with the acquired brain injury and we said, “no, no, no, that's not what we asked, how are you?”, and she was quite taken aback and the one thing she said that's really stuck with me is that that was the first time anyone had ever asked her how she was and how she was getting on and that's really stuck with her and she's become quite a big supporter of Headway Essex now. | |
| James (10:27) | Yeah, and pass it on to other people, it can be really difficult, it might be that your loved one isn't quite the same person that they were before and you're kind of coping with that, there's day-to-day sort of managing conditions and impairments, it's hard work Jennie, isn't it, and I guess for some of these people, space just to vent and say, do you know what, I'm really struggling at the moment, this is difficult and don't, not to be judged. | |
| Jennie (10:52) | Yeah, yeah, absolutely, just having that open space where there's just that, yeah, that safe space and being able to share openly and actually say, yeah, this is really hard and I'm not enjoying it and it's not fun, but what can we do about it and yeah, it's some of these loved ones and carers as well, some people just don't have that kind of caring element about them, do they? But not everybody does, everybody's different, so to then be put in that place where actually you need to become almost like a nurse and a support worker and all of these things but still maintain that loving relationship can be really difficult sometimes. | |
| James (11:32) | Yeah, really hard, it might be that you were the one that was kind of cared for actually, you know, the person who had the brain injury you if you did the jobs around the house and looked after you and paid special attention and now the roles kind of get reversed and often in an instant. | |
| Jennie (11:44) | Yeah, absolutely and there's the term ambiguous loss, I don't know if you've ever kind of come across the term but the, almost like the grieving of the person that's still there in form but has, is very, very different and obviously that's not always the case, sometimes it can go the other way, so sometimes that person can be a lot nicer than they used to be or they, it might have kind of given them a bit of time to think about actually I need to slow down, I need to spend more time with my family and with my loved ones, so yeah, they can, it really depends on the person and the family dynamics. | |
| James (12:20) | Yeah, I mean there's that saying isn't there, “you've seen one brain injury, you've seen that one.” | |
| Jennie (12:25) | Yeah, absolutely. | |
| James (12:26) | The impact on people and families is just enormously different from case to case. So Jennie, you're doing amazing things, so we ought to say the money word, didn't we, because these services cost to run. I know that some Headways around the country have sort of commissioned services from the local NHS, is that the case in Essex or were you just running completely independently from the health service? | |
| Jennie (12:48) | We don't kind of link up so much with the health service, I think other Headways are similar in the sense that the health service don't always see the health need with the Headway charities. But that being said, we do have some day centre placements that are funded by the local ICBs and NHS funding. We do work with the local authorities, so adult social care, they do fund placements within our day centres as those spot purchases and we also, yeah, we really go out and do our own fundraising and really fly that Headway Essex flag and get that money in in various different forms, whether that's through grants and trusts or through people being very, very generous and donating money.But yeah, it's always the battle absolutely in the charity world. | |
| James (13:39) | Well, you heard it here first, folks, if you want to go and jump off a cliff or out of an aeroplane or do something crazy and raise some money, Headway Essex will be very grateful to receive some of that to support their amazing services. And Jennie, if people are out there and they don't want to give money, well they do, but maybe what they want to do is access your services, how do they do that? Can they just roll up to a day centre and say, “hi, I'm here”?Or is it a case of going through a kind of assessment booking process before that? | |
| Jennie (14:06) | Yeah, I mean there is a process before that, but we're very flexible and we know that for some people that's quite difficult to access, so we're really looking at our referral process at the moment to make it a bit more user-friendly and inclusive and accessible. But yeah, just absolutely pick up the phone, give us a call, ask if you can pop in, and that goes for people that are living this experience, but also for professionals as well, because the more we can get that message out and seeing is believing, isn't it? I think we can talk the talk and we can say we do all these wonderful things, but actually seeing that for yourself is a completely different story.So yeah, we are quite open to visitors, we've always got the kettle on, ready for a good cuppa and a chat. | |
| James (14:49) | That's always good to hear. And is it just adult services or do you work with children and young people as well? | |
| Jennie (14:56) | Yeah, just adults, yeah, directly sort of affected. Obviously when it comes to family members, there might be children involved and we might signpost to appropriate services or we might offer different resources for them, but in terms of that direct support, it's for adults with acquired brain injury and their loved ones, yeah. | |
| James (15:13) | Sure, great, and I will put some links under the podcast, you can check out Headway Essex's website. I know there's some interesting work happening at the University of Essex in Colchester as well around kind of head injury and social care projects. I'll see if I can put a link to that stuff as well.So Jennie, what about the next 40 years? Where is Headway Essex going to be in whatever that will be, 2066? | |
| Jennie (15:37) |
How exciting is that? I think we're in a really, really exciting place where we're all just looking to strive and achieve the best, and whether that's through, I don't know, that fundraising element or our services, we would really like to reach the whole of Essex. We want to be out there, we want everybody to recognise who we are and what we do, but ultimately give that excellent support and that service of excellence to people with acquired brain injury and their loved ones.And for that journey to be smooth, because I think there's always that transition between the acute stages to the rehab centres to then that kind of community element is not quite there yet. And I think hearing from you guys and hearing from other research departments and things, it's really exciting to see that acquired brain injury is at the forefront at the moment. And we're really excited to hopefully work with you guys around that and just try to develop those services and that knowledge of acquired brain injury. And I think looking at that prevention as well, I think it's a massive focus in terms of the NHS plan, isn't it? But actually, there are some ways, sometimes there's not, but there's sometimes ways that we can prevent these brain injuries from happening. So it's raising that awareness, particularly in the construction industries and things like that, just making sure that people are aware that this is what could happen. And we really don't want that to happen. So yeah, moving forward to that proactive mindset rather than the reactive and having the support there when it happens sort of thing. |
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| James (17:13) |
Yeah, let's hope that the world looks a bit different and that we've got less brain injury and better treatment and better care in sort of 40 years' time. Sort of thinking back to 40 years ago, and it must have been around that time, I can distinctly remember a huge fundraising campaign to buy a CT scanner for the Colchester Hospital. The first CT scanner they were going to have, and now there's probably half a dozen in a big hospital like that.So we know stuff has changed over those 40 years and it will move forward. And you said quite rightly that at the moment, this is a kind of an interesting time for brain injury. So at the time of recording, there has just been a research highlight notice published by the NIHR encouraging investment and research in traumatic brain injury. And we are waiting on the publication of an action plan from the government, which I'm told is coming out in June. It's the 29th of May today. Fingers crossed, if it has come out, there's a link underneath this, right? Because you should of listenened to it when it came out. So yeah, stuff should happen, right? There seems to be a kind of willingness to make things change. And it's only going to change, I reckon, with the help of organisations like yours, and all of the volunteers and all the people that work with you, that are really kind of driving the change as we move forwards. |
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| Jennie (18:29) |
Definitely. And we're really looking to change our mindset as well, in the sense that our services and the future of Headway Essex is driven by the service users and by those people with that experience of brain injury. We're starting up some different kind of service user forum groups.And we've spoken about the research element and making sure our service users are really involved in that. But there's just those opportunities to get the people with that real experience, the experts in these situations, right to the forefront. And that's what we've been doing gradually over time, making sure that there's that opportunity of potentially volunteering after accessing the services. It's something we've seen, and we've really pushed for a lot in the last few years. So we've now got some of our volunteers who go into hospitals with that lived experience, so they can really speak from that experience, rather than just giving that factual information and advice. But also within our day services, within our community services, but also going out to fundraising events and speaking from experience, it has so much more depth and meaning to it. So yeah, we're really trying to really flip that decision making so it doesn't sort of come from the top, it comes from the ground and really what is wanted and needed by those people, definitely. |
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| James (19:51) | Yeah, fantastic. And certainly the people that I've spoken to have done that sort of thing, really, it's a chance then to give something back, right? They really want to help, kind of support the organisation that kind of helped them.Well, listen, Jennie, we are running out of time with our chat. I've really enjoyed finding out more about Headway Essex and congratulations on your extended 40th birthday, and all the best of luck moving forward. Thanks so much. | |
| Jennie (20:13) |
Thanks for having me. |
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