0:00

If somebody comes and there's no information,

0:02

I'd look at the nurses to get

0:04

more information. If the person wants to

0:06

talk about reproductive issues, you know, I

0:08

might think it's a lot better for

0:10

our nurse to visit the person at

0:12

home and talk about them. Fellow homicides,

0:14

my name is Tory Robinson and welcome

0:16

to, welcome back to Epilepsy Sparks Insights.

0:19

If you're new and you haven't done

0:21

so already, please do like and comment

0:23

on this episode and subscribe to our

0:26

channel. So to support our mission to

0:28

decrease the discrimination faced by and improve

0:30

the quality of life of those affected

0:32

by the epilepsy. And also get everybody

0:35

appreciating and excited about the amazing epilepsy

0:37

research that is out there. So, this

0:39

week we have part two with the

0:42

star neuropsychiatrist Mike Kerr. Mike is

0:44

going to share with us recommendations

0:46

for clinicians who are unfamiliar with

0:48

intellectual disability and epilepsy, tips for

0:50

effective care, and always keeping in

0:53

mind the quality of life of

0:55

the people affected. Well Tor, it's

0:57

great to be here again to have

0:59

a chat with you about epilepsy, which

1:01

I can obviously talk for a long

1:04

time about. So I might Kerr. I've

1:06

worked in epilepsy for over the last

1:08

25 years. as a specialist in epilepsy

1:10

and over the years I've become specifically

1:13

focusing on adults with an intellectual disability

1:15

and complex epilepsy as well as working

1:17

on various research projects over many years

1:19

with often with colleagues around the world.

1:22

Do you have any recommendations for people

1:24

who say clinicians who aren't

1:26

familiar or confident necessarily with

1:28

communicating with people with intellectual

1:30

disability and epilepsy? What is

1:32

I think they're probably a lot

1:34

better than they think they are. And they just

1:36

believe that it can be done. We're not actually

1:39

really, a lot of the time, it can't

1:41

be done any more than what, you know.

1:43

The person can't speak, you can't, you know,

1:45

you're not going to be able to probably

1:47

change that unless, because a thing could be

1:50

helped with the communication advice. I think, you

1:52

know, the main thing is that what we

1:54

know from people quite rightly, if people

1:56

don't like, if they're completely able

1:59

to communicate. come into a room

2:01

and the doctor talk to someone else.

2:03

Oh, that is so rude and disrespectful.

2:05

Oh my gosh. I'm of somebody who

2:07

doesn't, you know, tends to give people

2:09

a chance. So I think sometimes some

2:11

people just don't quite get it or

2:13

sometimes in some situations the carrier might

2:16

be very dominant and it might be

2:18

very hard to get a word in

2:20

elsewhere apart from that carer, but obviously

2:22

it's not. and I generally don't know

2:24

how to do it. So I just

2:26

try and smile, you know, just try

2:28

and get what I can, you know,

2:30

and then ask the person, do you

2:32

know how this works, you know, is,

2:35

what's the best thing I can do,

2:37

what does this, I like, or that's

2:39

what can we do outside? And I'll

2:41

be very lucky to work with where

2:43

I work in power, self-self, authority, with

2:45

fantastic noses, who will often know the

2:47

person as well, and will often know

2:49

the person who will be another person

2:52

as well, and will be another person

2:54

as well, and will be another person

2:56

as well, and will be another person

2:58

as well, and will be another person

3:00

as well, and will be another person

3:02

as well, and will be another person

3:04

as well, and will be another person

3:06

as well, and, and, and, and, and,

3:08

and, and, and, and, and, and professors

3:11

are very daunting and so they can't,

3:13

some of them are not daunted at

3:15

all, they just tease me but they,

3:17

some of them are definitely daunted and

3:19

so you have to use other people

3:21

to help that and I suppose it's

3:23

one of these not knowing what you're

3:25

not knowing things again but recognize what

3:28

you're not, what not having that communication

3:30

means to your decision making. So there's

3:32

some information pieces you would have and

3:34

you're going to have to work with

3:36

other people, but what does that mean?

3:38

You know, can I work with those

3:40

people? Are they, you know, have they

3:42

got the right to give this information

3:44

in terms of the act in terms

3:47

of the families? Are they any good?

3:49

When do they first meet the person?

3:51

You know, so you have to work

3:53

on how you use what you've got,

3:55

but don't be upset, I think, that

3:57

you can't communicate. as well. Some people

3:59

are really brilliant and just have a

4:01

fantastic personality and can cajole people along.

4:04

A lot of people, you know, there's

4:06

a lot of non-communication in medical offices,

4:08

isn't there? So it isn't just... and

4:10

not actually off of disabled people. Indeed.

4:12

Like the way you are physically, the,

4:14

you know, eye contact or lack of

4:16

eye contact, tone, everything, patience, and actually

4:18

that's another interesting thing isn't it? And

4:20

this affects everybody, like, it's conditions, patients,

4:23

families, the limited time you have, often

4:25

with these people affected. And I would

4:27

wonder, you know, is it's you know

4:29

important to realize that you have to

4:31

sometimes slowly build a relationship with the

4:33

individual and sometimes their family? Yeah, well

4:35

you have to slowly and it can

4:37

be quite a difficult thing if you

4:40

know if there's a particularly intense situation

4:42

because often you'll meet in an intense

4:44

situation when things are at their worst.

4:46

Yeah. And you have to of course

4:48

build relations. What our fantastic pediatric colleagues

4:50

do, they build very very strong relationships,

4:52

you know, with people over time. I

4:54

mean you can't not build a relationship,

4:57

but it's a bit... transferance, counterfeit transferance,

4:59

you know, you're dealing about intense emotions

5:01

with people. But I think it's a

5:03

big thing, and I fully understand how

5:05

I'm quite lucky as I work in

5:07

a setting that's quite kind to me

5:09

in the time I get, and with

5:11

a community team who are fantastic, who

5:13

support. But I worked in the air

5:16

production, which was also fantastic, but I

5:18

would be seeing people probably, you know,

5:20

every 10 minutes, and you had to

5:22

prioritize which bit you would get out

5:24

of that consultation. And that was before

5:26

you had to speak for an hour

5:28

about Sonia Valprotter, and before you had

5:30

to talk about other things, and you

5:33

could just about get through it. So

5:35

those structural impacts on people, and so

5:37

what you know what our colleagues do

5:39

is they try and use bits of

5:41

their team everywhere, so they'll use the

5:43

nurse will do one bit and they'll

5:45

try and make the best out of

5:47

the time they have to get to

5:49

the same end point, which is somebody

5:52

actually... It's taking part of something they

5:54

know that and they know what they're

5:56

taking part in. So then just build

5:58

intellectual disability. It is

6:00

a barrier but it isn't a barrier

6:02

that should stop you having treatment and

6:04

that's its biggest danger is a barrier

6:07

that stops people and I think sometimes

6:09

professionals find it hard because of the

6:11

complex sort of legal framework of people's

6:13

consenting or not and that makes them

6:15

you know not sure how far you

6:18

can go forward of doing something and

6:20

you know it's not thinking it's just

6:22

takes a lot of time it's taken

6:24

an hour to do something which that

6:26

would be four patients in clinic company

6:28

or something. And how do you make

6:31

time for that then? Do you think

6:33

like do you and many other people

6:35

have to literally go into your own

6:37

time for this? I can make time

6:39

by having a longer time for my

6:41

appointments. Okay, but not all hospitals grant.

6:44

Absolutely they want all grant that and

6:46

it's and it's and it's very poor

6:48

efficiency by the hospitals to do that

6:50

because you're going to get you're going

6:52

to save lots of other appointments in

6:54

the future by getting the time to

6:57

sort of things that. And a lot

6:59

of professionals just take use all their

7:01

experience to try and cut things out

7:03

and get to and they get to

7:05

the core of the matter as quickly

7:08

as they can you know and as

7:10

be as safely as they can and

7:12

then hope then then we'll you know

7:14

work with their with their broader team

7:16

so if somebody comes and there's no

7:18

information I'd work with the nurses to

7:21

get more information of the person want

7:23

to talk about reproductive issues you know

7:25

I might think it's a lot better

7:27

for our nurse to visit the person

7:29

at home and talk about them then

7:31

in the exacting with Emily around, parents

7:34

around, you know, and all that sort

7:36

of thing. So you can do it.

7:38

You just have to, I think you

7:40

said earlier, you have to cut into

7:42

a little bit, you can't hold it

7:45

in one go. You know, it might

7:47

be several consultations before you get to

7:49

know. Good useful IT systems would be

7:51

helpful if they, one they exist. They

7:53

would be fabulous, wouldn't they? Especially if

7:55

they could connect between departments, let alone

7:58

trusts. Could you imagine? But they can

8:00

be they can be fantastic but it's

8:02

very rare. Usually it's just another barrier

8:04

to. And of course if people have

8:06

intellectual disability the history is very important

8:08

because there's a far higher chance of

8:11

having had a complicated life in child

8:13

with the pediatric services with an epilepsy

8:15

than it is with general adult services.

8:17

By complicated what do you mean? I

8:19

mean you know being very ill children

8:21

with lots of tests and lots of

8:24

different drugs tried and hospitalisation and then

8:26

that doesn't look like the person who's

8:28

in front of you when they're 18

8:30

who might have had a very good

8:32

last six or seven years but that

8:35

information is actually quite important very very

8:37

important from the beginning so... Families will

8:39

be incredible for that. You know, mothers,

8:41

grannies will be amazing. Even siblings I

8:43

bet sometimes if you can get them

8:45

involved. Definitely siblings are there going to

8:48

be more challenged by working probably and

8:50

stuff as well. you know, but don't

8:52

definitely say feelings. They'll be taking on

8:54

the mantle for some people. But I

8:56

can imagine as a sibling, sometimes, you

8:58

know, how siblings can communicate in ways

9:01

that sometimes it's not really cool to

9:03

communicate with your mom and dad, right?

9:05

And so sometimes I would imagine they

9:07

could have something to contribute or sometimes

9:09

you need different members of the family

9:12

might not feel comfortable talking about certain

9:14

things. Definitely, yes. And I thought to

9:16

be a lot of people will be

9:18

in care providers will still being often,

9:20

usually involved, but not doing not living

9:22

with the family. So sometimes, you know,

9:25

it's used to, so that will also

9:27

be an important dynamic. But I think

9:29

in the end you can go an

9:31

awful long way and you can make

9:33

a lot of decisions and it shouldn't

9:35

be a problem. Communication is inevitable. And

9:38

we've got a lot of, you know,

9:40

exciting new treatments which we have to

9:42

try and deliver to people and that,

9:44

you know, the new drugs that are

9:46

existing, the drugs, you know, specific epilepsy

9:48

syndromes. So I mean the syndrome will

9:51

nature thing I'm sure you've had people

9:53

talk about and talk very brilliantly about

9:55

specific, extremely interesting genetic syndromes and this

9:57

sort of thing. And then on the

9:59

sort of cold phase the challenges to

10:02

you know is get somebody set up

10:04

to be able to get the best

10:06

success out of such an intervention. Or

10:08

maybe not even able to be, if

10:10

you're in a very small area, you

10:12

might not even be able to access

10:15

the medication or have to refer to

10:17

someone else to access the medication. So

10:19

it's trying to keep that pathway going.

10:21

But a lot of these people, you

10:23

see, will also who need you know,

10:25

say with Lennox-Gasto or Dravae, those sorts

10:28

of conditions, will last level of co-mobility.

10:30

So they will need the learning disability

10:32

services in the UK, you know, to

10:34

help with supporting access to healthcare and

10:36

to support with psychology and all the

10:38

other things. So it's often a bit

10:41

of the same, you know, they need

10:43

a more complicated epilepsy, but it's on

10:45

the background of a more complicated. health

10:47

system. There's things like digestion, I think

10:49

people don't talk about enough, huge contribution

10:52

to people's lives, isn't it? In even

10:54

seizure frequency sometimes, as well as mood.

10:56

I think a lot of people who

10:58

have been quite ill for quite a

11:00

long time with epilepsy and intellectual disability,

11:02

people will be looking for lots of

11:05

little small gains and probably not necessarily

11:07

expecting a massive success with one treatment,

11:09

although that obviously can happen even after

11:11

many years of different poor... poor success,

11:13

but we'll often be on one of

11:15

those little gains is in the person's

11:18

general health. I know that is things

11:20

like their bowels or their general, you

11:22

know, their physical fitness or the quality

11:24

of their life experience. And you can

11:26

never say for sure that's going to

11:29

change your epilepsy, but it certainly can

11:31

improve your life. So it's a thing

11:33

wrong for going for going for it.

11:35

And you will be looking at little

11:37

gains. So sometimes those little gains, you

11:39

know, might, you know, might just push

11:42

you into a much better bit of

11:44

your life. We work very very hard

11:46

on rescue medication plans. We don't have

11:48

many people on them because it's not

11:50

remotely always needed, but a very very

11:52

good rescue midazolant plan can get you

11:55

staff team feeling safe enough to bring

11:57

you outside a lot more. And you

11:59

can suddenly have a massive change in

12:01

life because you are seeing the environment

12:03

and you're going out. So it looks

12:05

like it's just about... just in case

12:08

you get status or some very complicated

12:10

reaction to your seizures but they can

12:12

open up doors. Literally. Yeah, literally open

12:14

up doors and I've certainly got people

12:16

who were in doors for a long

12:19

time until they could feel safe going

12:21

out and particularly when you know the

12:23

whole change to midazlan happens so if

12:25

you had your fit in. supermarket, not

12:27

that there's that many around in Mid

12:29

Wales, but if you had a supermarket,

12:32

you would have, you would have, you

12:34

would have, what I have someone to

12:36

look at you. So much of what

12:38

you've said applies to people who have

12:40

epilepsy, other conditions, but don't have intellectual

12:42

disability too. I think this is good

12:45

advice for people all around, really. There's

12:47

very little that's fundamentally different, apart from

12:49

the communication, which can be difficult. and

12:51

can be child, you know, can be

12:53

difficult in anybody sometimes. And I suppose

12:55

just the higher preponderance and prevalence of

12:58

rare, rare epilepsies is they associate with

13:00

intellectual and they associate with chronic ill

13:02

health. So, and that is a very,

13:04

you know, that's a very expanding world

13:06

and great for families because you know

13:09

people are focusing on these people who

13:11

are not always the focus of their

13:13

most interest you know in terms of

13:15

service provision or interventions. Thanks again to

13:17

Mike for inspiring us to improve the

13:19

lives of people with an epilepsy, intellectual

13:22

disability and often much more which can

13:24

even have a ripple effect and improve

13:26

the lives of families slash caregivers as

13:28

well. Check out more about Mike and

13:30

his work on the website T-O-R-I-E-Robinson.com where

13:32

you can also access the podcast, the

13:35

video and the transcription of this whole

13:37

episode all in one place. And if

13:39

you haven't already, don't forget to like,

13:41

comment and subscribe to the channel and

13:43

share this episode with your friends, colleagues,

13:46

family members, universities, schools, the person down

13:48

the corner shop, anywhere, because this supports

13:50

our mission to decrease the discrimination faced

13:52

by and improve the quality of life

13:54

of people affected. by the

13:56

epilepsies around the world

13:59

world also get everybody

14:01

appreciating the incredibly the

14:03

epilepsy research out

14:05

there. See you next

14:07

week! week.