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Across cancer services in Greater Manchester, amazing work is happening every day. Frontline staff, managers, clinical leaders and people affected by cancer work together with the simple focus of making sure that every person throughout Greater Manchester is able to access a world class cancer service.
This podcast is all about sharing some of the work going on with the wider Greater Manchester Cancer workforce – that’s thousands of people across all areas of Greater Manchester, working in many different roles - and giving some of the fantastic people who do that work the opportunity to share their experiences with everyone.
In each episode, presenter Steve Bland (from the BBC podcast You, Me and the Big C) will focus on a different topic and talk to some amazing guests so if there's anyone you'd like to hear from or a topic you want to see covered, please get in touch.
For more information about GM Cancer visit www.gmcancer.org.uk.
GMCTopicEpsSeriesEp1EDIT
Wed, Jul 24, 2024 2:32PM • 33:40
SUMMARY KEYWORDS
patient, needs assessment, nurses, holistic, concerns, macmillan, healthcare professionals, cancer, people, talk, support, written, mick, treatment, felt, care, offer, good, documented, understand
SPEAKERS
Mick Connolly, Lydia Briggs, Colette Kelly
Colette Kelly 00:00
Okay, so I'm Colette Kelly, I am the programme lead for personalised cancer care at Manchester University Foundation Trust.
Lydia Briggs 00:07
I'm Lydia Briggs, I'm a clinical lead for personalised care at Greater Manchester Cancer Alliance.
Mick Connolly 00:12
My name is Mick Connolly. I've just gone through the treatment for head and neck cancer.
Lydia Briggs 00:16
So we're going to talk to you about what we call holistic needs assessment. So what are they? Why do we do them? Why are they important? And before we get into the details, I was going to just give some background to how these came about. So most of you will know that people when they're diagnosed with cancer will go through quite a lot of different treatments, and they can be quite intense. And then they often kind of go back to return into whatever the new version of normal is after that. But actually, we know that there are a lot of different concerns people can face after a cancer diagnosis. So there can be physical things like side effects, or late effects after treatment, but also the emotional side of things. So how they're feeling after the cancer, and then also the the wider parts of their lives. So how it impacts finance, work, relationships, everything that makes them who they are. And actually, that was more recognised as of about 2007, when we realized that cancer patients don't just have their treatment and then go back to normal life, there's a whole different range of concerns that can affect them long after. So we realised that we needed to look at what we call their holistic needs, so everything about them. So that was initially recognised in the NHS cancer reform strategy in 2007, which led to the development of something called the National Cancer Survivorship initiative. And from that a lot of different policies came out guidance, talking about prioritising people's concerns and trying to support them after their cancer diagnosis. So from the point of diagnosis onwards, and it also features in are the key policies now to like the Long Term Plan, the Operational Planning Guidance, and now it's really at the forefront of the care that we provide to people with cancer, to make sure that those needs are actually supported. So what a holistic needs assessment is, is divided into three different parts traditionally, so the holistic needs assessment itself is an assessment tool that can come in many different formats, and asks people about what matters to them, what is concerning them. So it talks about different physical concerns, emotional, social, spiritual, everything about their lives. And then they get the opportunity to talk through that with a healthcare professional to understand the issues and what can be done about them. And then from that a care plan is created. So the care plan, the main aim of that is to actually create an action plan for how to address these concerns, whether it's a referral to a different service, whether it's signposting them to places in the community, to charities, to support groups, or just to give them a leaflet for health and well being information. So there's a whole wealth of things that we can offer to support people. But the holistic needs assessment process really aims to capture some of that, and find a way to improve quality of life for patients.
Colette Kelly 03:14
So can I ask then, Mick, you said that you've had a neck cancer and could ask, have you been supported would you say from the beginning of your diagnosis, right the way through with your own holistic needs and your own concerns and issues?
Mick Connolly 03:32
I have been supported all the way through mainly by Macmillan nurses, speaking to them on the phone, they've been ringing me up every week. And whilst I was having the treatment, I lost my taste buds. So then the Macmillan dietitians were ringing me up, telling me how and why I had to eat to keep my strength up. And so I had to learn to accept that and start eating again, you know, and I put my weight back on and everything and the Macmillan nurses have been on to me sometimes twice a week, and they're still talking to me now on the telephone 12 months after the treatment is finished. And they've literally got me through everything that has happened to me, you know,and that's why I've agreed to do this programme now. To help other people on the way that whatever kind of cancer you have, there's plenty of help out there. So don't hesitate, pick up the phone, ring, the Macmillan nurses, anything, there's plenty of help out there. So please, don't suffer in silence.
Lydia Briggs 05:38
It's really good to hear that you had such a positive experience of the support that was available to you. And I think you mentioned before we started recording that you found that your needs had changed throughout your experience. So when you were diagnosed, would you say that you had quite different needs and sort of feelings about everything than what you do now? Because you said that your concerns have mostly gone now?
Mick Connolly 06:05
Well, I did, for obvious reasons. I mean, it hit my head straight away, it hit my mind that something like this has never happened to me before. And at my age, I thought I was retired and have a nice, easy life. But then when this hit me, it knocked me six, it really did. But thanks to the help of all the Macmillan nurses, and everybody else, Maggie's and everywhere else, and all the leaflets I've been reading, I've got through it. And I've learned now that my needs are not what they were when when this first hit me type of thing, because I'm getting on with life now. And I don't need as much as I did then. But by the same rule, I've still got a Macmillan nurse phone numbers on my phone so that if anything ever crops up, I can just pick up the phone and ring them. And I know that I'll get a reply, which will help me sort out whatever problem I've got. So yes, my needs have changed, because I haven't got as many needs. Now it's as easy as that, you know, because I've learnt to get through it with the help of the Macmillan nurses. So like I said earlier, don't suffer in silence, there's somebody there to help you all the time.
Lydia Briggs 07:11
Yeah, that's really good to hear. I think that kind of brings us on to talking again about holistic needs assessments, and like the role of them for people. So as Mick said, your needs kind of change throughout the journey. And actually, one of the considerations with holistic needs assessment that we try and factor in as healthcare professionals is how we offer it. So when we do it, where we do it, what format, we do it, trying to make it personalised to the person, because actually, they are extremely important. And the support that is offered is extremely vital to people. But if we don't do it in the right way, it doesn't always have that benefit. I don't know, if you wanted to add anything Colette?
Colette Kelly 07:54
Offering it and helping patients understand how beneficial it could be for them is, is what's really important. Patients need to understand that there's a wide range of issues that they might be affected by, it could be financial, it could be relationships, it could be sexual issues. The list is endless, really, isn't it? And it's about helping patients understand that we can try and support them with any of those things. At any point, so you don't just get offered one the diagnosis and then that's it, you can you can be offered a holistic needs assessment by anybody in your team, at any point throughout the journey. I know in MFT, we've sort of set a guidance that within the first 12 weeks of diagnosis, everybody should be offered a holistic needs assessment, and the patient understands what we can support them with.
Mick Connolly 08:52
That's very true. Yeah. The only thing I'd like to say to anyone else out there who's suffering cancer, of any shape or form, is to talk about it. I know it's hard, I found it very hard. Not only to talk but to have somebody to listen, you know, whether it be a member of your family or a neighbor, a friend, but it's very good to talk because it gets it off your mind. And it stops you're worrying. Because the main thing that got me down more than anything, was sitting there worrying about it, you know what's gonna happen next. But if you talk about these things, and get it out of mind, even like I've done I wrote a story for the Macmillan nurses, I wrote my story. And that will help to put it down on paper and everything but get it out to your mind by talking. And that will help you immensely. It's helped me immensely. And like I say with with the reliability of the Macmillan nurses that I can still talk to. It's helped me get through this and I hope by me doing this now that I can help other people get through it, but the best way to do it is don't suffer in silence. And talk about it. Macmillan nurses, friends, anything talk about it, get it off your mind. Don't worry. I know that sounds hard, but don't worry about it. Talk about it. Don't say 'If' say 'When' don't say 'If I get better' say 'When I get better'. That's the way to go about things.
Colette Kelly 10:23
I think that's very good advice Mick, you know, a lot of people do find, sharing their worries and concerns with loved ones quite difficult, because we're all trying to protect each other. So the loved ones are saying they're fine, the patient themselves are saying they're fine. But actually, nobody's fine. everybody's worried, everybody's stressed, nobody's sleeping, they're all waking up at one in the morning with with a pit in the stomach feeling dread. So I think it is important if you are concerned, and you are worried about things to share it. And that's definitely something you can talk about in a holistic needs assessment. And then the nurse or whoever it is the Cancer Care Coordinator that's undertaking the assessment can give you some help and advice and support of how you can deal with your worries and concerns, but also refer you for more professional support. If you feel that you need it.
Lydia Briggs 11:15
I think I've found as well. So I did some PhD research on holistic needs assessment. So I spoke to quite a lot of different patients and staff about their experiences of a holistic needs assessment. And one thing that really came out from that, for me was the fact that people were surprised by the support they got from it. So they weren't always that comfortable talking to people or opening up to people, or didn't realize how to say really how much they needed to talk until they did. And so it came in different forms. So for some people, it was the act of actually sitting down and going through that assessment and thinking, you know, hat are my concerns? What are my priorities? And which are the things that I can actually control and do something about in this scenario? And for some people just sitting down, and actually answering those questions really helped them to process and move on from that. But for others, being able to talk through the concerns with somebody and like process that out loud, was helpful. So particularly, because some people said it felt like it gave them permission to talk about things that because with their family, they'd very much felt like they had to be strong and had to be kind of not breaking down. But this was a way to actually get everything they felt out in the open without feeling like they were putting a burden on to their family. So that was like some really positive feedback that I had about holistic needs assessment from people in research, but also the care plan side of things. So the care plan, because it's sort of written down as an action plan and a summary of the conversation. And people said that actually having that record with small goals on what they could do for themselves, things that they could work towards, was really beneficial for them. So it wasn't just about actions for the health care professional to take, it wasn't just about us, giving them leaflets or referring them somewhere or giving them phone numbers, it was actually giving them the kind of control back to say, I can do this for myself, like I can look at this around diet and exercise, I can look at this around managing my symptoms, or actually start focusing on going to a support group and things like that. So it very much gave patients a sense of empowerment was the feedback that I got. So yeah, I definitely agree that having somebody to talk to is a really key thing that I think holistic needs assessment offers.
Colette Kelly 16:27
The standard is that every patient that's told they have a diagnosis of cancer has to be told with a Macmillan nurse present, or a clinical nurse specialist present. And that clinical nurse specialist and the team will support you with all these holistic needs, and help you through the journey really. So I think it's very, very different, isn't it, then then how it was?
Lydia Briggs 17:42
And I think as well, a lot of the support services that are out there now that we can actually signpost people to, through a holistic needs assessment, a lot of them didn't exist. So there wouldn't have been all these places that we can direct people to, to get support for finance or emotions, and just different aspects of their life that they're struggling with those services just weren't there before. So we're in a really good position at the moment that not only have we got this assessment that will help us to identify people's concerns, but we have ways to support them that we didn't have before.
Mick Connolly 18:15
I'm coming around to thinking that way now, which led to it's good to know all that. Because like so then 20 years ago, I would have ended up suffering in silence. And, you know, eating myself up and everything you know, but as things are now I don't need to do that. Because like you've just heard now there's so much help out there. Which is why I said earlier on don't suffer in silence, there's no need to suffer in silence anymore. Because there's so much help out there. So I'm asking you now, don't suffer in silence, speak up, speak to somebody, pick the phone up, ring them, Macmillan nurses do anything, there's plenty of help out there. So go and get it.
Lydia Briggs 18:55
I think as well that we have to also think about from a healthcare professional point of view is I know a lot of people listening will be healthcare professionals. But we have to think as well that we've heard from Mick, that there's a big sort of benefit to having the support and all of the resources that exists out there. But actually, as healthcare professionals, we have to consider the quality of holistic needs assessments that we're doing. Because there's a lot of evidence that says that, if we try and do these sort of quickly to tick a box as it were, because we've got targets around these, and we have to do them that actually they don't have the same value. So people don't necessarily have Mick's experience if we don't do them in the right way. And actually make sure that we're prioritising the personalised care side of things. So we're actually focusing on working around the patient and what matters to them and offering them solutions that are actually meaningful. And I know Colette you've had experience of that as well.
Colette Kelly 19:54
It is really important that we ask the questions at the right time. And it's the right person that asks the questions. And I think that comes with a relationship, doesn't it? If you trust the person, and you feel that they're being open and honest, and they're going to be very helpful, you're more likely to share any concerns that you've got. But I do, as part of our quality assurance process at MFT is we do check the care plans. And we do check that they are personalised, and that patients are signposted to relevant support that suits them. And there's no point saying to them, well, there's there's this support that you could go to, but it's five miles away from your house and you don't drive how are you going to get there? You know, so it's about making sure it's personalised for that individual.
Lydia Briggs 20:50
So holistic needs assessments, obviously, generally are a form. But I do think it's a really important point to make, and that sometimes people don't want it in that format. So I think it's really important for us to be kind of adaptable to working with the patient in the way that is most useful to them. So if people don't want to complete a form, it's how can we still have that conversation? How can we still produce a care plan? How can we still set actions without necessarily completing it in the exact same way and being quite adaptable to doing that differently? And I think that's, that's really important, because I know that we all find as healthcare professionals at quite challenging sometimes to meet the targets that we need to meet to standardise it in a way that everybody can use, but also to actually personalise it to patients at the same time, because it can be quite complex to meet all of those things at the same time.
Colette Kelly 24:30
Because sometimes using a checklist, so to speak could be a barrier, couldn't it? For some people who find reading difficult, for instance, having a page put in front of them with hundreds of words, might be quite uncomfortable for them. And that could be a barrier. So for some people, just a conversation is going to elicit the best results, but for other people, actually having a checklist that shows them a list of things that they can talk about whether that is you know, emotional feelings, relationships, sexual, religious, all sorts of things can matter to different people. And having seen that written down can really help them think, oh, I can talk about that. But I do think it's important to do it opportunistically as well as a separate appointment. Because you might just, you might be having a conversation with a patient, and it's just right at that time to pick up on something that they've said, and address it there and then, rather than saying, Oh, we could do with a separate appointment to do a holistic needs assessment, you know, it's about being flexible, isn't it with when you offer them how you offer them, and who offers them?
Lydia Briggs 25:43
Yeah, because I think we have challenges with trying to fit things into our services and fit things into a day around different clinics and car parking and different challenges that we have and that patients have. But actually, the priority of this is that we actually support people, and we are able to offer solutions that make a difference, and that enable them to move forward. So that has to be the priority no matter what form that comes in. So I think something I've learned from being personalised care leader, a few different organisations and doing my research is that I think that we have to be adaptable, there isn't a one size fits all approach to this. And we have to kind of work around each person individually as much as we possibly can. And sometimes that means having different processes in place for different patients or different teams, which can be quite a challenge. But I think it's the only way to really make sure that we're focused on supporting people and what matters is personalised.
Colette Kelly 26:43
Absolutely. Can I just bring something up Mick? When you've been supported by your team, and they've shared some information with you? Have they ever actually written anything down and given you what's known as a care plan?
Mick Connolly 26:59
Not directly as a plan, like I said, the majority of my negotiations, if you want to call it that has been over the phone we're of once I've left the hospital type of thing. I've been on my own, but anything I've wanted, I've just picked the phone up and rang them up. And they've explained things over the phone, you know.
Colette Kelly 27:15
So, you felt really well supported, and all your needs have been met? Which is absolutely fantastic. Would you have found it useful to have anything documented? Of the conversations that you've had with the nurses?
Mick Connolly 27:30
As we've just talked then, documenting it, to me, doesn't help me because doctors talk like doctors and doctors explain things in their own language. And that's a language which which I don't understand, and not many patients will understand. And so, like, Colette said a checklist, it's not really all that good really. I mean, somebody's gonna have to read that checklist. So why not just have an interview with the patient and say, right, how old are you? Where do you live? What sex are you? And write it all down there. And then in front of them, instead of which I was told that why I was falling asleep and everything as three different letters, you know, CRF, and I thought, What the heck is CRF? So I had to ring up one of the Macmillan nurses and ask her what CRF was, because I didn't know it off the paperwork. So once I rung up and she told me what it was. Yeah, all right, fair enough. I can live with that. She told me how long I'd likely to have it and that it would go away and everything else. And so it made me feel a lot better. But writing it on paper, just didn't do any good ror me. I don't know what all these initials are all about. After all, I'm not a doctor, I'm a patient.
Colette Kelly 28:45
So for you then, it was more about the support that you were offered. And the comfort knowing that when you did have an issue whenever it arose that somebody would be there and would help you and answer it, more than having a documented letter to say this is what we've discussed and this is what we've suggested you could do to help your cancer related fatigue.
Mick Connolly 29:09
That's what I've dealt with all the time and I felt better, like I say, knowing you know, somebody just talked spoken to me and said, Look, this is wrong, that's wrong. This is and we can put it right. That's much more, you know, I can stomach that far easier than reading it on a piece of paper and thinking and scratching my head and wondering what the heck, you know. I can stomach it when somebody tells me what is wrong and how they're gonna put it right and what I'll have to do to help myself that way I know where I stand. That to me is calling a spade a spade. That's a better kind of language for me because I can understand that language.
Lydia Briggs 29:51
Would that opinion change at all just out of interest if the document that you received was written differently? So what we try and encourage people to do with care plans is they don't include any acronyms. They don't include loads of medical terminology that doesn't really make sense to people, but they're actually written with the patients as the target audience. So giving people little, like small goals that they can do for themselves written in a way that actually makes sense to you, contact details for any where that you need to get in touch with and information like that. Do you think it would be useful to have it in that format? Or do you still think that wouldn't really benefit you?
Mick Connolly 30:30
I mean, all this sounds like I'm stupid, but I'm not being stupid in any way. I'm trying to put it across that it's better coming like that, worded in plain English. And, you know, draw a picture if you need to draw a picture. Why this is wrong, why that's wrong, we can get out of it, what we can do to get around it, that comes across to a patient much better than this is ABC and you've got CDF, and you've got La dee, da, da, da, which patients don't understand.
Colette Kelly 30:59
And I think that's yeah, I think that's really valuable, isn't it? You can't always remember everything that somebody told you either. So to have a written record is really useful. But I know when I've been doing the quality assurance in our Trust, some of the care plans that have been written are phenomenal, aren't they, they're phenomenally detailed, but the 24 pages long, and I can't imagine many patients reading past page three. So I think it's about definitely documenting conversations and support that you've had, but in a way that you understand. And it being quite short, and useful and meaningful. Yeah, so it's not about how you write it's well, it is about how you write it.
Lydia Briggs 31:42
And I think it's good to hear that there is some value to kind of doing that. But as you point out, if it's not written in a way that is meaningful to the patient, then it has no value, it just becomes a record, like the clinical notes that we write down. So I think focusing on the patient as target audience of a care plan, and making it and with that in mind, a lot of people have issues with memory with concentration, with things like that after their treatment. So actually, being quite succinct, and just including the detail that is most necessary and most useful, is the best way to actually do a care plan for people.
Colette Kelly 32:23
So would we do it in bullet points? Or do we need to do full sentences and paragraphs?
Lydia Briggs 32:29
I don't think there's a definite way to do it. But I don't think there's a wrong way either, I think as long as the informations there, and it's delivered in a way that is sort of clear and brief and gives the patient everything they need to know, then I think that's what's most important. Would you agree Mick?
Mick Connolly 32:48
I think yeah, I think you're right. But I mean, it's a two edged sword, you know that you don't necessarily know exactly what is or how to word, a remedy for a particular patient. But if the patient tells you exactly what is wrong, why he's feeling like this, when he feels like this, maybe just before he goes to bed or whatever, you have a better chance of understanding that and then write it down, as you've just heard it with your idea of a remedy for that particular thing. But like I say, it's a two edged sword. The patient has got to be honest and truthful with the doctor or nurse or whoever. That way. As I said earlier, you're all on the same level then and you're talking the same language.