Professor Claire Surr talks to people living with dementia and their carers about their experiences of diagnosis and support.

Host

Hello and welcome to Beckett Talks, the podcast series from Leeds Beckett University and these podcasts we will be showcasing our diverse community of students and academics, touching on the important themes that surround universities today.

Sarah

I'm Sarah Caldwell, and today I'm going to be finding out more about a good practise guide, which will help people who are living with dementia Leeds Beckett Centre for Dementia Research has put together a best practise guide for Memory Assessment Services, which can be one of the first points of contact for people with dementia and their carers. Professor Clare Surr from the Centre for Dementia Research in the School of Health has led the work on the guide and joins me now.

Sarah

Claire, thanks for taking part in this podcast. Can you tell me first of all, what are memory assessment services?

Professor Claire Surr

You're welcome. I'm pleased to be here. Memory Assessment Services are commissioned to carry out assessment and diagnosis for people who are experiencing cognitive problems. So that could be memory, as in memory assessment services, but people may have other problems as well. So it could be that they find that getting lost or they put in things in strange places, they might have problems with communication.

Professor Claire Surr

So anything that could be a symptom of dementia, people are referred on to a memory assessment service. So these can be located in different places depending on where you live in the country. So sometimes they're based within the mental health trust, sometimes within the acute hospital trust, and sometimes they might be based within primary care or GP practises.

Professor Claire Surr

And they can also be in different locations that people may go to a hospital to be seen, they might go to a local primary care hub or a GP surgery to be seen by staff there, or somebody might come out to their home to do the assessment.

Sarah

Ananger and Joanna, Jill and Steve and Dave are all users of memory assessment services, whether it's patients or carers. They've joined us to talk about their experiences over to you Claire.

Professor Claire Surr

We're really interested in your experiences of attending a memory assessment service. You've all had quite different experiences but also some similarities in those. So Ananger and Joanna. Can you tell us a bit about your experiences of attending memory assessment services? What did they offer you and what was that experience like for you?

Ananger

The tests were very good because I started to with the asking about yourself and then reading an address and then forgetting about it and then carrying on talking about different things and, and then coming back to it. And I couldn't remember and that's, that's when I realised that there could be something wrong with me.

Joanna

I was actually present. A teacher of his memory assessment clinics and was brought into it to ask what was it like at home? Had I noticed any particular difficulty was having with this memory and obviously I was able to say all of that. Then I went out of the room while he did the test and then and they actually discussed the test with both of us and invited me back into the room.

Joanna

And then we discussed the test and the score he got and I was there for his second memory assessment, which was a year later and a similar sort of thing. And when it came to the third year, I'm afraid I made the big boob because although the invitation was addressed to both of us, I assumed it was the same thing again and I didn't attend.

Joanna

Only this time it was with a diagnosis of Alzheimer's and he couldn't remember what was said in that meeting. And they were very good. And they actually invited me back again with my husband so they could go through it again. And they invited a third party, Alzheimer's society, to sit with us, too. And they then gave this supervision for aftercare, because once we were diagnosed, we would then discharged straightaway.

Professor Claire Surr

Okay. Thank you. I think that's really insightful into into the process and your experiences. Jill and Steve, do you want to tell us about your experiences, of attending Memory Assessment Services?

Jill

Well, our first experience was a telephone call from the doctor up to it after we'd been up to this, that this was at the very beginning of the pandemic to say that we thought there was something wrong. And his first assessment was delayed with the phone, and it was a Sunday with the Sunday paper and everything there. So it was quite the questions were very easy and doctors said there's nothing wrong with it, your wife's worrying too much. I knew we hadn't got there for that reason. So nine months later, we went to the doctor again and they did the more intense, or it was the nurse actually, more intense memory thing where it was scored. And that was when they said that there was a problem.

Jill

But we didn't get given the diagnosis and we would just said we'd be referred. And then there was another however many months, and that lots of telephone calls for me to find out what was happening. And eventually we, the psychiatrist, actually came here to see us and then I stayed when we both in the room, she said, I want to ask you first and then your husband and vice versa.

Jill

So we both explained where we were coming from or what we thought and timescales. And my timescales were slightly different to Steve, obviously. And then she just said, right, I can categorically tell you it's vascular dementia. So one thing I found a little bit strange was we were told we would have an MRI scan and it was only set up for a CAT scan.

Jill

And I asked what the difference was, and she said, well, wouldn't you know, colour and like audio sounds and the other is black and white, but so I said, well, does that mean it's worse? It was an explanation as to why she could so easily see what it was from that which never we never really got an answer to.

Jill

After that, she said, you'll hear from one of my nurses in a couple weeks but that didn't happen either. Our experience hasn't really been very good.

Steve

I think one thing that would be very useful is that when however poor or good it's been in the build up to things that they say, Okay, we'll now see you again in six months or three months, or a year, because at the moment, you know, we're still floating around and I'm not sure where I am.

Steve

Sometimes I'm really good sometimes and not quite as good as I think I am, but if somebody said, right, don' worry about it. We'll be visiting, you know, you could say, well, in about a month or three months or whatever, at least there's something there that's concrete and you know, it's good to be that in your life. And that's very reassuring.

Professor Claire Surr

Yeah. The really important point, Steve, you know, I think it mirrors what quite a few of you said about just feeling left when you get that diagnosis and and that sort of hanging around, not knowing what's going on. This, I think, describes it perfectly.

Jill

There's been no follow up whatsoever at all. I mean, the other thing I've found slightly concerning is that they told that there was absolutely no cure or nothing they could do to help him. There was no pills. No, you know, we weren't looking at nothing, absolutely nothing. It's just that you've got vascular dementia, get on with your life, which is basically what happened, wasn't it?

Steve

Yeah.

Professor Claire Surr

So let's come onto Dave now, who's been sitting patiently. Now Dave, you've got a quite different experience, haven't you, but similar in many ways. Tell us about your experiences applying the assessment services.

Dave

At first it was during the pandemic. So it was never going to be easy for the nurse that came to the house. Where do you start? I could start with well, I was doing stupid things at work, working in the security industry. I was leaving doors unlocked and I was leaving site gates open and that was noticed.

Dave

So obviously I went to the doctor and I was having what I call absences where I just didn't know where I was anyway. To cut to the chase. GP referred me to the mental health team as it is here. The nurse came from the mental health team, and done a test similar to everybody else. So asked an address, asked me certain questions and they, they'd asked me to draw, like copy a little drawing. So it was in the, in the assessment. So she went away. That was all fine. In the back of my head I knew I had some sort of dementia. I'd seen it in my mother and I'd seen it in my wife's mother. So I knew what was coming. So when I got the letter saying it was alzheimer's I thought that's right. I think I knew that. Let's get on with my life. And that's what I endeavoured to do for six months. Now, my eldest is a nurse, but she mainly works with the elderly, so she's seen it much more than I have. And the she was saying, you're coping too well with it? Next thing I know, there's a Greenway where people walk their dogs.

Dave

Okay. So and apparently I was walking down there in my underpants at half past elevn at night. The police were called, an ambulance was then called. I was taken to hospital where I had choice. I have either been sectioned, or I could go in voluntary. So I went into a mental health hospital voluntary, and that is where things changed for me because they did far, far more tests than I had under the mental health team.

Dave

I had upwards of, what, 20, 20, 25 maybe 30 different tests, most of them type of memory. And in scoring I was getting 97-98% and one I scored 100%, but my spatial awareness, and I always remember this, I was given a set of building blocks, one was white, one was black, and you had to follow the pattern on them.

Dave

And for the life of me I couldn't do that. When I come up with a diagnosis of mild cognitive impairment, which I think is probably right. Why didn't I get that right in the first place?

Professor Claire Surr

Yeah. You've had a quite a time of it over the last six, 12 months or so, and it's been really kind of you to share your experiences with us in this group. It sounds like you've all had quite similar experiences in some ways, variable experiences in others.

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Professor Claire Surr

We've been working on this project together to develop this good practise guide. And what do you think is the key thing that Memory Assessment Services could do better based on your own experiences? What's what would have made a real difference? Do you think to yourself? So let's go to Ahnanger and Joanna, again, to start with.

Joanna

I think having a follow up service is key both to the carer and the sufferer because dementia is it's it's really personal to the person and their carer, and not everybody follows the same path. So you're left not knowing, oh, at month six this is what's going to happen, at month 12 it's this. Because you don't know. For us, my husband was diagnosed with a false stroke.

Joanna

Overnight he couldn't speak clearly. He was stuttering a lot and his mobility again. Overnight he went downhill and he was falling over and I kept saying to myself, you know, it's part of his dementia, but it got so bad he fell over face down in the dirt in the garden as he was gardening, and I couldn't get him up. It took quite a while for me to get him up.

Joanna

So I went to the doctor who immediately thought he'd have the stroke, and that's when they said, no, it's a false one. And this is nine months after diagnosis. So I phoned the doctor who got the falls team out. We got all these equipment. Oh, oh, oh, lovely. But I said, I don't know whether this is part of timing.

Joanna

I don't know what's going on. And I needed help. And the GP said, Well, who you under? So I said: You. And you've done nothing. You have not come out, you've not spoken to me nothing and I don't know what's going on and I'm trying to care for my husband. Because I pushed we went to see, well actually we had a telephone conversation which I've just explained my husband couldn't speak clearly. How nonsensical is that? Cos we have the geriatric consultant phone us up and he couldn't speak. He just, you know, he was stuttering so much because he know get nervous on the phone that he just handed the phone over to me and I said, look the top and bottom of this is, it's part of dementia.

Joanna

Is it going to get better? And he said no, his false stroke was part of dementia and that was the missing bit between his thought and his speech and his movement and his brain. He did explain it really, really well, but that's it. That's all we've had. We've had nothing else, and that's only because I pushed for it so well.

Joanna

We're back where we started from know. But I have to say, it's people like yourselves and the Alzheimer's Society who have done all of the work I think the NHS should have done personally.

Professor Claire Surr

It's been lovely to have you as part of this group. You've made such a valuable contribution. I'm so glad that you've you're getting a lot out of it as well. It sounds like that it's that support after diagnosis that's missing definitely from your experience, isn't it? What about Jill and Steve?

Steve

What the lady said? There was this absolutely spot on, so I couldn't better that.

Jill

I'd say the same. I just think there's no follow up. I don't even know whether we've been discharged. I just know we've never heard from from another soul, and as as Dave said you know they societies and you know the care in the community have been invaluable. And I do think every single case is so totally different.

Jill

I think part of the problem is the doctors don't know the answers to the questions we want to ask you know, I mean, Steve's looked on the Internet and said to me it said you he was only going to live five years, that is absolutely rubbish. There's no such thing as a timescale on it. And I think a lot of the questions going through my head really not answered because I don't think anybody really knows.

Jill

I think everybody as we've said, is totally different. And our journey is very personal to each of us. And it would be lovely to have somebody who you could just ring and say, is this normal? Has this changed? Is this going to be a definite change? You know, what's the next stage likely to be if I see a change in Steve because he's being told that Vascular dementia is like steps, but you don't know how big or how short or how long those steps are. And is there any thing you can do to help the stages and what happens when there is the next stage. As in, do I need to do something different? Does he need to do something different? So you know that would you just feel that you've sort of left completely alone.

Jill

Is it really which is why again, I'm just saying that I just that it's great to be part of this because it really helps.

Professor Claire Surr

Good I'm glad to hear that we've been working on the Good Practice Guide. Why do you think that that's such an important thing to be working on? And what do you hope it will achieve in terms of improving memory assessment services? So we'll go back to Joanna and Ahnanger again.

Joanna

Anything I think that helps doctors to to look at it not from a medical perspective, but a holistically from a people's perspective is really, really brilliant, anything you can do to help them see us as people, not statistics, would be fabulous. And also to bring on board those who care, whether it's a spouse or neighbour or anybody else, because we are doing the majority of the looking after.

Joanna

And if we don't get no help, how are we going to cope? I've had periods where quite frankly I could just sit and cry because I didn't know where to go who to talk to, what to do and if it weren't for outside organisations, I don't know where we'd be quite frankly and I think if we can put a good guide together to let them realise we're not statistics, we're real people trying to have a real life and dealing with something that we know is not easy to deal with and that would be wonderful.

Ahnanger

And another thing is, is to free up the NHS because my wife is an unpaid carer. If, if it, if it wasn't for her I'd be in hospital or a home where you know, somebody else would have to look up to look after me. So I say that the she should be commended but she does.

Professor Claire Surr

I think you've really expressed it really well that Joanna and Ahnanger about just how important it is that you are, everybody's people and not statistics. And there's, we know there's thousands of people feeling the same way as you two do around being left with no support and feeling they don't know where, where to go with it.

Professor Claire Surr

And so yeah, hopefully we can do that with this guide. Jill and Steve, what about what do you hope we'll do with the guide?

Jill

I just thought what Joanna said was spot on, but, you know, she couldn't have put it better and it's that, you know, just perfect.

Sarah

Thank you so much for sharing your very personal experiences of using the Memory Assessment Services. Claire, why do you think there's such a difference in the memory assessment services across the country?

Professor Claire Surr

So memory assessment services are commissioned on a local basis, so the clinical commissioning group who are responsible for commissioning NHS services across a particular area. So for us it would be across Leeds City region, they're commissioned by the commission in different ways based on what they see to be local needs. So depending on what the commissioners put forward is how memory assessment services might be run and so different and NHS organisations or primary care can bid to take on the contract for the memory assessment services and so services can provide things just from memory assessment and diagnosis and then might discharge on to another service to post diagnostic support or some services, are commissioned to deliver some post diagnostic support or support right through to to end of life care. So where you live in the country very much determines what memory assessment services will look like.

Sarah

So you've been looking at this good practise guide. How does that work.

Professor Claire Surr

We were commissioned by NHS England and NHS Improvement to look at what was going on in memory assessment services and in particular to identify good and innovative practise. So the Good Practise Guide and we developed with our expert advisory group which is made up of about 30 people who work across memory assessment services or charities or the clinical networks or other organisations linked to or who might support people use of memory assessment services.

Professor Claire Surr

And with our group of lay advisors who were all people who accessed or are supporting someone whose access to memory assessment service. And what we went through was what would a good or an innovative memory assessment service look like? And so it looks at all the different areas of memory assessment services from the sort of values and ethos of the service and thinking about the pathway that you have through from referral and first contact, the assessment process and the tests that happen, delivery of a diagnosis and then support and ongoing support as well as things like staff development and linking in with other services.

Professor Claire Surr

So we we used a process of groups where we we met and and had quite a number of good meetings where we went through and looked at each area. What might good practise look like, what might innovative practise look like? And this had to be things that were feasible, even if they might be kind of not what anybody was yet doing, but things that services or experts thought actually we'd like to be doing that, or we think it's feasible that we should be offering that, but we're not sure anybody is doing it yet.

Professor Claire Surr

And they're very kind of general statements about what people can expect from a service. So it's not telling people exactly how to do it. But it's saying things like people should expect certain things or staff should be able to deliver certain things within the guide. So the idea is that assessment services and people working in them can pick up the guide and use it in a very flexible way.

Professor Claire Surr

So it's not you should be doing everything in all of this. And it's if you want to improve your referral process, what are some of the things you could think about? If you want to think about improving how a diagnosis is delivered, what are some of the things you could think about? So it's that kind of designed to be a pick up and put down guide and to use flexibly within services to think how they could improve the particular aspects of their care.

Sarah

And what do you hope the outcome will be of the good practise guide for the people who actually use the services.

Professor Claire Surr

At what we hope the outcome will be is that services will start to think about the different areas of delivery, and particularly the ones where often staff know that things aren't working quite right and they'd like to do things better. Most services are getting regular feedback from people who use the service and the staff also know as well if if things don't feel quite right, people aren't happy or they don't feel like delivering as good a service as they could.

Professor Claire Surr

So what we hope is that services will be able to pick up the guide and work with people who use their service to see how they could deliver services in line with our good practise areas and from there, make changes to their practise, hopefully to improve things for people who use the services. But we see this as a kind of working collaboratively - it wouldn't be something to say, Oh, we just need to do this, so we just need to do that.

Professor Claire Surr

It's about, let's have this full area, think about how we do it and how it would work for our service with people in who use it.

Sarah

Well, thank you for joining me today, Claire, to tell me all about the Good Practise Guide, and particularly to Ahnanga, Joanna, Jill, Steve, and Dave for sharing their honest and emotional experiences.

Professor Claire Surr

You're welcome. Thanks, Sarah.

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