Emergency Preparedness with Dr Beverley Lee

Melanie:

Welcome to the Family Carers podcast where we help mums, dads, sisters, brothers, aunts, uncles, anybody caring for a loved one or friend to feel supported in their role and connected to their community. Today we're joined by Dr Beverly Lee. She's a consultant in palliative care at Forest Home Hospice in Poole. Forrest Holmes' vision is that every adult in our community affected by a potentially life-limiting illness has equal access to the support and services they need, whenever and wherever they are, in order to enhance their quality of life through clinical excellence, exceptional service and compassionate care. In this episode, we're going to learn about the role of the hospice and how that evolves as a person's care needs change, the steps that families should take to prepare for emergencies and how the hospice supports this, the holistic therapies and expert services that are available through the hospice, and key advice on how to live well, even in the face of serious illness. So if you're a family carer and are affected by a life-limiting illness or bereavement, this episode's for you. I'm Melanie Cohen. Stay with us.

Hi Beverly, how are you today?

Beverly:

Thank you very much. I'm very well, thank you. Good.

Melanie:

Well, welcome to our podcast. And for anybody who doesn't know you, hasn't come across you before, perhaps we could start by just you telling us a little bit about yourself.

Beverly:

Yeah. So I'm Dr. Beverly Lee. As you said, I'm one of the consultants at the team that work at Forest Home Hospice here in Poole. And I've been in palliative medicine now for well over sort of 30 years. And I've been a consultant for the last 12 years as well, working at Poole Hospice Forest Home. And I really enjoy my job.

Melanie:

Amazing. Well, I mean, I've had the privilege to come and visit the hospice and I was blown away by by the breadth of service that you offer. So I think it would be really helpful maybe to start by talking to our listeners a little to tell them a little bit about the role of the hospice and how that can evolve as a person's care needs change and what maybe what families can expect during those transitions.

Beverly:

Thank you. I think I'm going to start first of all by explaining a little bit, when we talk about hospice we're often talking about palliative care and just explaining a little bit about what palliative care means because actually for a lot of people, including healthcare professionals, we really don't understand quite what palliative care means. So palliative care is about the care of a person when they're living with a serious or life-limiting illness, when perhaps the focus is much more on how the illness impacts on their life rather than focusing on the treatment for that illness. We often might phrase it as a sort of supportive care. And it's about sort of making sure that people's focus is on support and comfort for the individual themselves, but also their families. And it's the aim is to really try and improve someone's quality of life rather than necessarily extending life.

Melanie:

Really really useful to have that kind of that overview because I think palliative care can be quite a scary term because people may associate it with that unable to provide any more treatment so it's not an active treatment that you can have and that can be obviously really quite devastating and frightening So to understand actually and to see it through a different lens, as you've just put it, really helps to reframe and to help us all understand what palliative care really is.

Beverly:

Yeah, and I agree with you. I think people are very worried that actually if they're referred to the hospice that it is about that they are at the end of their life and that people haven't perhaps told them that their life is very short at that point. Whereas, in fact, we will meet people throughout the whole stage of their illness. So for some people, we might meet them at the start of when they've only just had the diagnosis. But then for other people, we might carry on with their journey with them as their illness advances. And we do provide that end of life support as well.

Melanie:

And so when we're talking about timeframes, I think that's another misconception is that palliative care is very short because it only happens right at the end of somebody's life. But as you've just enlightened us, it can actually be for quite a long period of time. And what it actually means is that there's no active treatment. But that doesn't necessarily mean that it's for a short period of time.

Beverly:

Yeah, no, certainly. And again, people are worried that if they're under the hospice, they won't be able to have any active treatment. But actually we work, we're there to provide that extra support for people that are still having treatments by their GP or their hospital sort of teams and that. And we provide that extra care to sort of be alongside them. Certainly I deal with a lot of people that are living with cancer and they will still be having cancer treatments like chemotherapy.

Melanie:

Okay so a really integrative service. But a nice continuity there as well because I know you offer a lot of services which we'll talk about a little bit later that aren't necessarily offered under the GPs or within the hospital setting so it's really lovely that people can access your breadth of service whilst also being treated by the hospitals. Yes, yeah. Okay, so let's talk about the transition. So you've told us about what that journey might look like and a little bit of an overview. So how can families expect to be supported by a hospice? How would they first come into contact with you? Would it be a referral from the GP? Can they come and get in touch with you themselves directly?

Beverly:

Yeah, so for most people it is a discussion that's had by their GP and then the GP will refer them to our service. Obviously if someone's unsure they can either speak to their GP or they can directly phone the hospice to talk about it but usually it's through the GP.

Melanie:

Okay, and then once they're referred to you and they kind of come under your umbrella of care as well, even if that is integrative with other healthcare professionals too, you're there to support them with various different services that you offer. So when we talk about transitions as their care needs change, you're there and you can help support and guide them through that.

Beverly:

Absolutely, yeah. And like you say, we're there as that sort of extra support for people, very much working with the teams that they're already well known to. Often, actually, when people refer to the hospice, the first time that we often will meet people is in the person's home and probably the majority of the time we're with someone will be in that person's home. So we have specialist nurses and doctors that will go out and meet the person, meet their family if they want that as well and just explain a bit about the role of the hospice.

Melanie:

That's really interesting to know that it's not just an inpatient facility.

Beverly:

Yeah, yeah, a lot of people think that hospice is an inpatient facility, and we do have the benefit of inpatient beds within the Dorset area. In fact, there's four hospices within Dorset itself, so Forest Home is just one of them. But actually, the the inpatient beds are very much more for people that perhaps need to come in for a very short period of time, a few days or a week or so, where perhaps something is more tricky at home. So perhaps they've got a difficult symptom like pain and actually coming into the hospice where they can be supported by the specialist staff there allows their pain to be better controlled and then they will go back home again.

Melanie:

Yeah, OK, really interesting to hear. So you must have quite a large team of various roles across the hospice to facilitate that community based care as well.

Beverly:

Yes, absolutely. Yeah, we do. So as well as we have a large team of community nurses. So I think there's seven in total at the current moment in time. We have doctors as well. We also have a hospital team which will go and see people that are, unfortunately, they've come into the acute hospital for various reasons and we'll support and guide them and their teams there. And then we also have therapists, so physiotherapy, occupational therapy as well, excellent social worker that we've got that helps to sort of look at the minefield sometimes of finances and also supporting people perhaps who've got young children, for example, that's really important. And then we've got other sort of services that provide a more sort of holistic aspect to someone's care as well.

Melanie:

Yeah, and I think it's so key, isn't it? Because when people are in what can often be an acute phase, a crisis situation, where they're having to deal with lots of changes or potential changes, understanding how to access the right support is really overwhelming. So actually having a service like yourselves, where there's various different roles and you can help guide them to what they need and when they need it, so it isn't quite so overwhelming, can start to relieve the pressure a bit, not just for the person who has been diagnosed with the condition, but also for their extended family.

Beverly:

Absolutely, yeah. We're very much looking at working as a multi-professional team, multidisciplinary, and because we work alongside the healthcare services that know them well, the social care services that know them well, we're really good at sort of communicating between each other to make sure the person gets what's right for them.

Melanie:

Yeah, and I know that as working with the organisation that I'm part of, so we're delivering home care, that working alongside your teams and other such teams across the area means that we can help to support specialist services and enable people to stay in their homes and comfortable and receive the support that they need. But working together is key for us as professionals so as we can make sure that we're accessing the right support for people too.

Beverly:

Amazing.

Melanie:

So what sort of steps would you recommend that families take for emergencies because obviously in an ideal world we know what's going to happen and we can plan for things but particularly in your field often I think these things are, they come as a shock, there may be an emergency situation and families aren't prepared. So obviously we don't want to be always planning for worst case scenario but Are there any steps that families can take to be prepared for emergencies and maybe how does the hospice support with those sort of situations?

Beverly:

Yeah, that's a really good question and I think as a nation, as humans we will all experience two things in life and one of them is birth. And one of them, unfortunately, is dying. But as a nation, we don't tend to want to talk about death. We don't want to talk about the end of life. People find it quite frightening. But actually, the evidence shows that, actually, if you do communicate and look at what your wishes would be, your preferences, and try to make some of those plans in place, actually, your experience of how your end of life will be is so much better than for those people that haven't thought about those things. We often with future care planning will often might term it sort of advanced care planning. Some people have heard of that term as well. And certainly the hospices again work alongside the person and their families to just try and explore some of those aspects.

Melanie:

It's a really difficult thing to talk about, isn't it? Because it's the same with us, with the customers that we work with. We like to understand what people's wishes are so as we can help to facilitate those when and should the time come. But having those conversations, it's a difficult conversation to open, isn't it? And people can be quite reluctant to talk about it or frightened, I think.

Beverly:

Yeah. And that's, I think, where we can certainly help because we've got the sort of ability to just help to do it in a very sensitive manner and to really let it go at a pace that that person wants to go at. It's a voluntary conversation, obviously. But it actually, I think, although people find it frightening, once it's down and out there actually they feel so much more relieved because they're often living with an illness that perhaps they can't unfortunately control what's going to happen to them from the illness but actually it allows them to have a bit of control about actually this is what I do want at the end of my life.

Melanie:

Yeah absolutely and I think that's a real privilege position to be in to be able to help somebody to have the best end of life experience possible for that person but also for their family and to be able to support the whole family can relieve the pressure and make it, it sounds like a crazy way to term it, but a more relaxed

Beverly:

Yes, absolutely. And it certainly relieves a lot of that burden for the family who perhaps, if they haven't had those discussions, are facing a really difficult time in their lives but actually don't really know what their loved one would or wouldn't have wanted and it can really help for that.

Melanie:

OK, so let's move on to some of the additional services, which I think are so, so important. And it kind of leads on from what you've just said, because we're very good at talking about treating symptoms and physical ailments and and things, tangible things, aren't we? as a culture, but we don't necessarily approach the spiritual or the holistic treatment in quite the same way. But I know it's something that you're really passionate about at Forest Home and something that forms a foundation of the care that you provide. So perhaps you can talk to us a little bit more about the holistic services that you offer and why you feel they're so important.

Beverly:

Yeah, so holistic care is really, really important because, as you say, it's not just basing the care on someone's physical needs, but actually it's looking at how that illness is affecting that person as a whole and their family. So perhaps looking more at the social, psychological, emotional needs of that person as well. And certainly holistic care improves overall well-being and can just help to support alongside perhaps some of the medications that we might also be advising on as well. We're really fortunate at Forest Home that we've got a great team and we can provide quite a lot of additional services to perhaps what most people think of within health care. Can you tell us about a few of those? Yeah.

Melanie:

So as people understand, because I think the term holistic care can be difficult to navigate, can't it?

Beverly:

Yes. So I'll talk through some of the teams that we have. So we've got an excellent counselling service, so they may provide one-to-one counselling support for the individual that's got the life-limiting illness. but also they can be there to help support and to help with counselling for perhaps family members that want to sort of talk in a safe environment about their loved one. That happens throughout the person's life, but also the counselling service will support those families after their loved one has died, so we have a bereavement support as well. We have that one-to-one, but we also have bereavement groups and volunteers that can help just to support those families after their loved ones die.

Melanie:

Really nice to see that journey continues, because that support is so needed, isn't it?

Beverly:

Yeah. and they don't therefore have to navigate new services either. They've often perhaps met the counsellors before, so they're familiar faces again. The other big team that we have are our complementary therapy team, which are so well received from people. and they provide that more holistic support where some of the therapies that they might offer are Reiki, aromatherapy, acupuncture, reflexology. So again, just allowing help with certain symptoms like pain, they're very good at helping with that, but also to just give that person that time in their well-being and perhaps reduce stress. help with their overall general being.

Melanie:

And I know when I came to meet with your team, they told me it's a very popular department.

Beverly:

Yes. Yeah, they've recently won an award for, they provide a service for people that got pain from a neuropathy caused by chemotherapy treatments. Okay. And they have recently won an award because they've had such amazing results with helping with that symptom. That's amazing. Yeah.

Melanie:

Really amazing, how great that they've been recognised for that, so really well done to the whole team for taking such a holistic approach because I believe it's really important and it's great to see that they're actually getting results that can give other people confidence that these services really are worthwhile.

Beverly:

In some of the other hospices within Dorset they also have day service hospices where a person may want to come for a few hours every week on a regular basis and it allows them to meet people in a similar situation to them and it's a nice safe environment for them to also talk to the professionals there as well. perhaps allow their carer at home to then have a few hours on their own as well to be able to do the other things that they want to do for themselves.

Melanie:

Yeah, brilliant, really good. We'll put some notes, some links in the show notes so as people know how to perhaps take a look at those services online. So we'll give some links to websites and things so people can navigate that if they want to kind of have a look, an initial look there. So is there any advice that you can give with all the experience that you've had for either the individuals with the life limiting illness or families on how to live well even in the face of serious illness?

Beverly:

Yeah, so I think it's around, so unfortunately perhaps you're not able to change the illness itself and change the journey of the illness, but it's about actually trying to help that person to to know what matters to them and what's important to them. I think communication is key, actually. I think allowing that person to be able to perhaps communicate their hopes, their worries, their fears, and communicate that with their family can really help for them both to travel along that journey together. With regards to sort of planning ahead for the future, we perhaps often might suggest that people look at sort of simple things that they can do to put their financial affairs in order, so making a will or amending a will, which Actually, in the UK, over half of the adult population haven't made a will, so that's something that can be done. Perhaps looking at your funeral wishes and making funeral plans, but also importantly, communicating with that person what matters to you, what's important. I think in terms of the person living with the life-limiting illness, it's about perhaps living a little bit more in the moment, taking things a day at a time, but also still having goals that you might want to achieve, but perhaps they're more smaller goals than things that you may have thought about previously. And I think I'll have to pause it, because I've forgotten.

Melanie:

That's all right. We can take a little editing break there. It's all right, because my nose is starting to drip a little.

Beverly:

Do you want to think what it's going to say? That's right.

Melanie:

So maybe start again from for the person living with a life limiting illness. You talked about living in the moment.

Beverly:

Oh, yeah. About the things.

Melanie:

Yeah. I don't know whether there was a natural break there that you could or whether you want to just repeat that a little bit again. Yeah. OK.

Beverly:

So living with the person that's got the life-limiting illness, they want to look at perhaps living in the moment, sort of taking a day at a time, looking at goals that they still want to achieve, but actually perhaps they're smaller goals than they previously would have thought about. Also looking at actually... I've forgotten it again, sorry. So for the person that's living with a life-limiting illness, it's about living perhaps a bit more in the moment, perhaps taking a day at a time and looking at goals that they still might want to achieve, but perhaps those goals are a little bit smaller than what they were previously. Yeah. Also perhaps recognising that as the illness progresses things in your daily life may be a little bit more challenging for you. Yeah. But actually sort of telling people about that because actually there can be a wealth of support out there, equipment that might help so that you can still remain as independent as possible. Yeah. And I think very much focusing on what matters to you and to allow those wishes to be heard, because actually those things can be really important for you as a person to help live. with your illness.

Melanie:

I think it must be really frightening for people to acknowledge that their illness is progressing and to ask for that help and maybe that's a barrier sometimes to people accessing additional support or services but as you've said there's so many things out there that can help support people to remain more independent and comfortable at home for longer as their illness progresses so it's kind of a, the sooner you ask because you notice those changes happening, the easier it's going to be to get you more support and so you don't reach a point where you're feeling really overwhelmed or you're struggling.

Beverly:

Yeah, yeah. And we try and encourage people perhaps to look ahead a little bit and sort of plan for if things are changing so that things aren't then all a moment of a crisis and actually it really helps people.

Melanie:

Again, to keep stress levels lower where possible and to give people that reassurance. And I think it's trying to avoid that element of surprise and overwhelm and crisis, isn't it? So if you can pre-empt things and so as people understand that if X, Y or Z happens or that's how they're feeling, that already you've had that conversation and they understand that the services that are there that can support them So they know how to contact those people. Yeah. Or indeed just what it might look like. Yes. So I know that some of our listeners will also be wondering about the financial cost of palliative care and hospice care. So maybe can you tell us, do people have to pay? Is this a private service or is it something that they access through the NHS?

Beverly:

Yeah, and you're right, that's a very common question that we get asked. Hospice and palliative care is free at the point of access. It is funded in part by the NHS, but actually most hospices within the UK do have to fundraise to provide the additional support that we do, particularly with all the holistic care that we provide. So because of that case, where I work, we have a fantastic fundraising team. I've spent some time with them.

Melanie:

They're very creative. They come up with some wonderful events and ideas.

Beverly:

It's amazing because actually with the amazing support of our local community, we are then able to fundraise to just provide those additional services that go above and beyond.

Melanie:

So maybe there might be people out there who aren't looking for hospice care or support from a hospice at the moment but can appreciate all the wonderful work you do and maybe might like to get involved with supporting some of your fundraising events. So maybe just give us a couple of events from this year that have been really successful or ones that you're looking forward to and maybe how members of the public can get involved with things like that.

Beverly:

So we've actually got an event coming up at the end of January which we did a couple of years ago now for the first time ever and it's based on the Strictly Come Dancing event so it's going to be at the Lighthouse Theatre in Poole on the 25th of January and that is amazing. We've got various people who've put themselves forward to dance and we've got professional dancers as well so that will raise a lot of money. people can come and buy tickets to watch that? Yeah, absolutely.

Melanie:

Okay, that sounds fantastic. We'll definitely link that up in the show notes so people can have a look at that.

Beverly:

And then other events, maybe smaller events, we have lots of sort of quizzes, bingo nights, we have lots of partnerships with events, so the London Marathon for example, people may nominate us to be their charity of choice for that as well. If you look at the Forest Home website, it's got all the diary of fundraising events that are going to be happening this year.

Melanie:

Brilliant, so people can definitely take a look at that. How about if people want to get involved by supporting you to facilitate that event? Because I'm assuming you need volunteers to actually make those happen.

Beverly:

Yes, absolutely. We've got an amazing team of volunteers and again, we wouldn't be able to do what we do without them. So again, if you look on the website, it will guide you into the volunteer service, but if not, contact our fundraising team and they'll be able to talk it through with you. We've got volunteers that do the fundraising, but we also have garden volunteers. volunteers to do some of the DIY type things and promotions as well.

Melanie:

I know there's always things like wrapping up prizes and all of those sort of things.

Beverly:

Christmas is always a very busy time.

Melanie:

So I'm sure you'll always appreciate an extra pair of hands for doing all of those sort of things. We've talked about the website, you've said there's lots of information on there, where can people go to find out more information other than your website?

Beverly:

Yeah, so our website's very good because as well as having the fundraising information it's got the information about the services but also some evidence of looking at where other people can go to be signposted. I suppose from other websites that are very useful, the big national ones, so the Macmillan website is very good for information for people and Marie Curie as well and that's very good. In terms of sort of planning ahead for your future, the Hospice UK website is excellent that has a a section on, they call it Dying Matters, but it just explains lots about putting your affairs in order, some of the legal things like lasting power of attorney, how you can get those and the practical things.

Melanie:

Okay, brilliant. Well again, we'll put links to those in the show notes so people can follow through and take a look at those. So sadly we're almost out of time. It's been wonderful chatting to you. It's such an important topic and I think something that people can be a little afraid of talking about. So thank you very much for coming on the podcast. And so as we can help to normalize these conversations and facilitate people to have more open communication about this sort of topic. Really wonderful insight as well into the services that you provide at Forest Home and also other hospices across the area too. So really valuable. Thank you very much. I'm sure that many of our listeners will benefit from the information that you've given us today, the insights you've shared with us, whether they're needing support from a hospice or just understanding the breadth of support that we have across our local area in Bournemouth and Poole, which we're very fortunate to have. So we'll make sure that we put links to all of these things in the show notes so people can find them and get in touch with you if that's what they'd like to do. So thank you again for joining us today, Dr. Beverly Lee. As I said, I've had the privilege of meeting your team at the hospice, and I really, I guess I went along with a preconceived idea of what walking through a hospice would feel like, and it was entirely different.

Beverly:

It wasn't at all what I expected. It's a very happy place.

Melanie:

It's a very happy place. It's full of very positive people. And the people who were there as patients also that I met were very chatty and very thankful, very grateful for the services that they were being provided with. And just, yeah, a really amazing facility that you and your team run there. So thank you. So again, thank you, Dr. Beverly Lee, for joining us on the Family Carer podcast. I really appreciate you being here. Thank you for listening to the Family Carer podcast. And a huge thanks to Dr. Beverly Lee for joining us. You can sign up to our newsletter if you want to learn more about what's going on locally. We'll pop a link in the show notes so that you don't miss out. All right, folks, remember to subscribe and share this with anyone who you think will benefit or needs to hear it. Thank you for joining us. There we go. Thank you. Well done.

Beverly: 

All right. It was amazing. Slightly not on the script, but it doesn't matter. We don't need to have a script. And actually it works better because otherwise you can't remember anything.

Melanie:

No, you can't.

Beverly: 

There's such a lot of rich information in there for people to... I think it's just people realising who we are and where we are.

Melanie:

I think for a lot of people, a hospice is somewhere that they don't even want to think about or look at or acknowledge because it's a dark place where if they end up there, it's all going to be doom and gloom. So they want to just block it out. But actually, by opening up these conversations, by normalising the conversations around end of life and how that can be a positive experience. If you can reframe it, you know, no one wants to die. But as you said, there's two certain seeds in life. One is birth and one is death. And I think the more fear that surrounds that, the harder it is to have those open conversations and to make that a positive experience because people will inevitably be diagnosed with life limiting illnesses. And the fact that we've got these support services that can facilitate a more positive experience is really important. Really important. I love the holistic side of it.

Beverly: 

Oh, yeah, it's great. Incredible.

Melanie:

Yeah. So your fundraising team must do such a great job to be able to fund. Yeah. Yeah.

Beverly: 

For people. Yeah. Yeah. Because it's still it's a bit sad, isn't it? Still in this day and age, the NHS don't recognize the importance of all of those things, because actually often for people we I do a bit, but actually it's those sort of services that really make the difference. Yeah.

Melanie:

I think people reconciling and processing your own emotions at the end of life. It's like it's now or never, isn't it? Suddenly the pressure's on to think about all those things that you were putting off and to process all of the things that have happened that you've blocked out in your life. And so it's those sort of services where it is more of the emotional, the spiritual side of things that actually when we can manage pain and we can manage the physical, the tangible stuff. But yeah, it's all those other things that really matter at that point. Yeah. Yeah. Thank you so much.

Beverly: 

That's all right. Thank you. Thank you for being a fantastic facilitator.

Melanie:

And again, I'm so sorry I was late.

Beverly: 

That's all right. How many of these have you done?

Melanie:

We've done three days. This is the third day recording. We've got one more in October and then we will have all the episodes ready to release. October, November, December. Right, excellent. So yeah, we're just really trying to highlight through the platform that we've got all of the amazing support services that we have across the BCP area. Yeah, yeah. Because when we find in home care that often when people reach out to us they're at crisis point, they don't know how to navigate the care system.

Beverly: 

Yeah.

Melanie:

They have no idea about what we've got available in this area. Yeah. And they're just kind of surviving just.

Beverly:

Yeah.

Melanie:

with everything that we've got, they can be really well supported, but they don't have the headspace to look for it. They need it delivered at the right time and not everything together because it's just too overwhelming.

Beverly:

And I think even, you know, you've got the public that don't know, but even professionals don't know. No, they don't.

Melanie: 

I mean, I'm always finding out about things that are suddenly around. No, we don't. Right, let's undo the airlock. Release you.

Beverly:

Yeah.