EXPERT PATIENT PROGRAMME:

NHS CONFERENCE 26^TH APRIL 2004, ROYAL SOCIETY OF PHYSICIANS

PART ONE: (SKETCH)

LONG-TERM CHRONIC CONDITIONS: THE PROBLEM

NARRATION

Hello, we are actors from Big Wheel Theatre Company and we are here to try to bring the themes of this confernence to life by looking at the whole story of a person living with a chronic condition. We’ll start at the beginning with diagnosis and the effect this has, not only on the sufferer, but their families, and the professionals dealing with them. We’ll then go on to look at how self-management can help again, not only the sufferer, but everyone.

We thought we might take as our starting point a completely exaggerated caricature of the status quo regarding the diagnosis and treatment of long-term chronic conditions.

Sign: ‘COMPLETELY EXAGGERATED CARICATURE OF THE STATUS QUO’

enter PERSON wearing sign saying ‘PERSON’ and GP, wearing sign saying ‘CARICATURE OF A BRUSQUE AND USELESS G.P.’

PERSON (stooping)

Hello doctor I’m feeling a bit low.

DOCTOR (feels with stethoscope)

Oh don’t worry just go home and get some rest.

PERSON (stooping more)

Hello doctor I’m feeling a bit lower.

DOCTOR (feels with stethoscope)

Oh don’t worry, go home and get some rest. Here: take a few tablets so you think you’re getting better.

PERSON (on all fours)

Hello doctor I’m feeling even lower

DOCTOR (feels with stethoscope, shock on face)

Oh gosh you must have some awful disease. I’ll refer you to the Specialist.

SPECIALIST (wears sign saying CARICATURE OF INSENSITIVE SPECIALIST)

Hello, I’m the Specialist, take off all your clothes. Hmm. Oh deary me, I’m afraid you’ve got an awful long-term condition.

PERSON

Oh no. What is it?

SPECIALIST

Well I can’t be absolutely sure but I think you’ve got Wellerwellerweller syndrome.

PERSON

What’s that? How terrifying. I’ve never heard of it. What did you say it was again?

SPECIALIST

Wellerwellerweller

PERSON

Tell me more, tell me more.

SPECIALIST

It’s a chronic condition.

PERSON

And what do I take for it?

SPECIALIST

It’s a chronic condition.

PERSON

And what do I take for it?

SPECIALIST

No, you don’t understand, it’s a chronic condition.

PERSON

But what do I take for it?

SPECIALIST

No, you don’t understand, it’s a chronic condition.

PERSON

But what do I take for it?

SPECIALIST

Oh for heaven’s sake woman, will you listen to what I’m saying it’s a chronic condition. You’re going to be ill for the rest of your life. You’re not a person any more, you’re a patient. (hands her a sign saying PATIENT) Your symptoms if anything will get worse not better. Even simple tasks are going to become Herculean labours. There’s nothing I can do about it. There aren’t any pills. There isn’t any therapy. We don’t really know what the hell it is. Awfully bad luck old bird. Take some paracetemol. Goodbye.

PERSON

Oh, well thank you so much for your help. Goodbye.

SPECIALIST

Goodbye, and don’t forget your clothes.

PERSON

Oh my goodness, I’ve completely lost my sense of identity and personal worth. I’m angry and confused, but mainly just completely terrified. What will my husband think?

HUSBAND (wears sign saying ‘ CARICATURE OF A BEWILDERED SPOUSE’)

Hello darling

PATIENT

Hello darling

HUSBAND

How were things with the specialist?

PATIENT

Well I’ve got Wellerwellerwellerwellerweller.

HUSBAND

Tell me more, tell me more.

PATIENT

Or maybe it was Wellerwellerweller.

HUSBAND

Never heard of it. What do you take for it?

PATIENT

It’s a chronic condition.

HUSBAND

But what do you take for it?

PATIENT

It’s a chronic condition.

HUSBAND

But what do you take for it?

PATIENT

It’s a chronic condition.

HUSBAND

But what do you take for it?

PATIENT

Oh for heaven’s sake, man, will you listen to what I’m saying it’s a chronic condition. I’m going to be ill for the rest of your life. I’m not a person any more, I’m a patient. My symptoms if anything will get worse not better. Even simple tasks are going to become a Herculean labour. There’s nothing I can do about it. There aren’t any pills. There isn’t any therapy. The doctors don’t even seem to know what the hell it is.

HUSBAND

Right, er, I suppose a quick shag’s out of the question?

Opening theme from Pulp Fiction. She takes out a huge samurai sword and cuts off his head.

NARRATION

As we can see the initial diagnosis of a chronic long-term condition be quite upsetting for patients and their families. It can also be difficult for professionals, especially those at Primary Care level who have to pick up the pieces. Patients can become a huge burden on their local General Practice. Let’s look at a couple of examples.

Take for instance the frightened panicky patient who continually revisits the GP in an endless and fruitless search for a cure.

Sign: ‘THE FRIGHTENED PANICKY PATIENT WHO CONTINUALLY REVISITS THE GP IN AN ENDLESS AND FRUITLESS SEARCH FOR A CURE.’

PATIENT

Hello Doctor, I’m frightened and panicky and I desperately need to know how to cure this horrible disease I’ve got.

DOCTOR

Right well I’m not at all the caricature of a brusque and useless general practitioner but care deeply for your welfare and really would like to provide you with a way forward. The problem is we don’t know much about Wellerwellerweller syndrome…

Patient starts crying, we hear tune of Mimi’s death song from La Boheme.

DOCTOR (hastily)

..but I’m sure we can make you feel better. Look, come back and see me next week and I’m sure we’ll come up with something. Take all these antidepressants. (hands over loads of pills, which patient swallows)

exit patient

DOCTOR

Right I’d better find out all about Wellerwellerweller syndrome…

(frantic searching in loads of medical textbooks, we hear ‘tell me more’ from Grease)

enter patient with hideous running sore all over face (?plastic fried egg)

PATIENT

Hello Doctor, I’m frightened and panicky and those pills you prescribed have given me a horrible side effect: a hideous running sore all over my face. And I still don’t know how to cure this horrible disease I’ve got.

DOCTOR

Well, as I say I’m actually very sympathetic and have been putting in a lot of extra hours in my already overstretched schedule to try to see what I can do for you, but this really isn’t my speciality and…

Patient starts crying, we hear tune of Mimi’s death song from La Boheme.

DOCTOR (hastily)

..but I’m sure we can make you feel better. Look, come back and see me next week and I’m sure we’ll come up with something. Take all these anabolic steroids to deal with that hideous running sore all over your face. (hands over loads of pills, which patient swallows)

DOCTOR

I really must find out something about Wellerwellerweller syndrome…

(frantic searching in loads of medical textbooks, we hear ‘tell me more’ from Grease)

enter patient with beard and bulging crotch

PATIENT (very deep voice)

Hello Doctor, I’m frightened and panicky and those pills you gave me have given me have made me feel a bit funny.

DOCTOR

Well I’m awfully sorry about that but that’s the problem with chronic conditions. The thing is, there isn’t really any proper cure, so…

Patient collapses and breaks into full rendition of ‘Core Ingrato’

NARRATION

Or, worse still, the aggressive know-all patient who quite frankly can be a bit of a nightmare

SIGN ‘THE AGGRESSIVE KNOW-ALL PATIENT WHO QUITE FRANKLY CAN BE A BIT OF A NIGHTMARE’

DOCTOR (to audience)

I’ve got this aggressive know all patient who quite frankly is a bit of a nightmare. (Puts on wee-willie-winkie nightcap and duvet. Sound of wolf howling. Michael Jackson ‘Thriller’ music. Doctor sits up in bed, scared) Hello, I’m not at all the caricature of a brusque and useless general practitioner but care deeply for your welfare and really would like to provide you with a way forward. Now, er, what is it you’ve got again? Let me see (consults file)

PATIENT (behind him, in werewolf costume)

You just don’t know anything at all do you, you useless man? What the hell do I pay my taxes for? Now listen up, Mr Waste of Space, I’ve got wellerwellerweller syndrome.

DOCTOR

Oh, yes, Wellerwellerweller, now I don’t know…

PATIENT

You don’t know shit, do you? (producing loads of medical textbooks and alternative medicine stuff) Now I’ve been reading up about this Wellerwellerweller syndrome and as far as I can see all I need to do is go on a banana and sausage-free diet with extra ACDC vitamins and regular doses of cantabulistick phremo-calcu-la-boab washed down with an organic phosphate-free Brandy Alexander the whole thing should just disappear in a fortnight.

DOCTOR

Er, well I’m not sure…

PATIENT

So why the hell can’t I get all that on the National Health? It’s a bloody postcode lottery isn’t it?

DOCTOR

Er, I don’t think…

PATIENT

No, you don’t think, do you. Well if you can’t prescribe a banana and sausage-free diet with extra ACDCvitamins and regular doses of cantabulistick phremo-calu-la-boab washed down with an organic phosphate-free Brandy Alexander my only option is to bite into your neck and suck your blood making you join the legions of the undead.

Bites neck, Doctor screams and becomes a zombie.

NARRATION

Ladies and Gentlemen, there is another way. Find out all about it, in a slightly more realistic drama you can actually relate to, (WITH A PROPER SET) after the break…

AFTER THE BREAK…

PART TWO: (DRAMA)

THE SOLUTION: SELF MANAGEMENT

The audience will return to find a living/dining room on stage: sofa, chairs, table etc but cluttered with ‘the paraphernalia of sickness’. SIGN: A SLIGHTLY MORE REALISTIC DRAMA YOU CAN ACTUALLY RELATE TO (WITH A PROPER SET)

Oasis: ‘Half a world away’ playing. Mr Smith in armchair. Cut music. Enter Mrs Smith with briefcase and shopping bags

MRS SMITH

Evening darling.

pause

I had a lovely day, thanks for asking.

pause

Anything good on telly?

pause

I popped in at Sainsbury’s and picked up some stuff for supper.

pause

Right well I’ll just put it in the microwave then.

Exit, comes in, lays table.

Do you want to have dinner at the table, or on your lap?

pause

David? Hello?

pause

Darling, you’re going to have to tell me one or the other. I can’t just guess, you know.

MR SMITH (angry)

Look I’ve had a crap day, all right, I’m feeling like shit, and you just come in and start hassling me.

MRS SMITH (angry)

Well I’ve had a crap day too, OK, and I’m feeling like shit, and I’ve been working my arse off all day earning enough money so you can sit in that chair and watch telly... No don’t say it, I know you’re in pain, but Jesus Christ, David, can’t you just at least pretend to be normal?

pause

Sorry.

MR SMITH (starts to lever himself up)

No, I’m sorry.

MRS SMTH

No, really, I shouldn’t have said that.

MR SMITH. (manoevres himself to table)

It’s OK. I’m the one who’s out of order. It’s been really painful today, and I just can’t see any way out and... oh I don’t know... (Table covered with medicines) This place looks like a bloody hospital.

MRS SMITH

I’ll go and get dinner, shall I?

Exits, comes in with dinner, arranges round medicines.

(Brightly) My mother rang about the bank holiday weekend.

MR SMITH (head in hands)

Oh Christ.

MRS SMITH

But I thought you wanted to go. You all get on so well.

MR SMITH

But we’ll have to take all this stuff (indicates sickness paraphernalia)

MRS SMITH

Well, er, we can get a roof-rack.

MR SMITH

And you’ll have to do all the driving.

MRS SMITH

Well I don’t mind, it’s only Yorkshire.

MR SMITH

And what about if I run out of medication?

MRS SMITH

Well they have chemists in Yorkshire - really, David.

MR SMITH

And I can’t manage those stairs – where will I sleep?

MRS SMITH

On the sofa-bed, like we do when the cousins are staying. Really, David you’re being a bit negative.

MR SMITH

Negative? Negative? Christ, Catherine, have you any idea what I’m going through.

pause

Sorry. Look, I know you’ve been working hard. Maybe you should take a break – aren’t you due a holiday?

MRS SMITH (puts down knife and fork)

If you carry on like this, David, I’m not going to need a holiday, I’m going to need a divorce.

Doom, doom, doom-doom-doom-doom Eastenders theme

Scene 2: (The next day) Calling the G.P.

MRS SMITH

Hello, can I speak to my G.P.? It’s Dr Rose. Thank you. (Pause) Oh hello Doctor Rose, it’s Catherine Smith here. I was just a bit worried about David. Yes I know he saw you recently. He said he was fine. Oh really. Well, he’s not fine, no. No, I think the medication’s OK but he seems a bit low and to be honest it’s doing my head in a bit. I’m worried I’m just not going to be able to cope if it goes on like this. Yes, right, I’ll suggest he sees you for a consultation. Is there anything I can do in the meantime? Well, he does have a few friends, yes, but he’s lost touch with them since the diagnosis. I think he’s a bit embarrassed. Yes, I’ll suggest it, thank you doctor.

The Proclaimers ‘My old friend the blues’

Scene 3: Better home life, Part I

MRS SMITH

Hello darling, I was speaking to Doctor Rose and she suggested you make an appointment to see her for a consultation.

MR SMITH

Oh I don’t want to make a fuss. She’s such a busy woman.

MRS SMITH

But you seem so down.

MR SMITH

Well all right, I’ll see.

MRS SMITH

And she suggested you might try doing more with your friends.

MR SMITH

Grunt

MRS SMITH

Why don’t you contact Laurence?

MR SMITH

Grunt

MRS SMITH

Well it’s just a suggestion.

MR SMITH

Grunt

song ‘I just dropped in to see what condition my condition was in’

Scene 4: (a few days later) Appointment with G.P

DOCTOR

Mr Smith, come in. Now, how are you getting on?

MR SMITH

Oh, fine, fine.

DOCTOR

Right, er, what about life in general, is everything as it should be?

MR SMITH

Well, I don’t seem to be able to do much. Everything seems so difficult.

DOCTOR

What about friends? Are you seeing much of them?

MR SMITH

Not really, no. Going to the pub’s too much effort, and I can’t use Catherine as a taxi service.

DOCTOR

Can’t they come to you?

MR SMITH

Well, the house is such a mess. Catherine’s at work all day, and I really don’t have the energy to do anything, and we certainly can’t afford a cleaner.

DOCTOR

Well, I can refer you to social services. You’ve got a clear case for additional help.

MR SMITH

Oh, that seems such a lot of trouble. And I’m not sure I like the idea of a stranger coming into the house.

DOCTOR

Well, why don’t you give it a try at least for a few weeks? It might help your wife feel better about things as well.

MR SMITH

Well, I suppose that’s a point. I’ll think about it. Thanks, doctor.

DOCTOR

Oh and before you go, why don’t you think about going on some sort of self-management course. They’ve got some leaflets about things like that in reception.

MR SMITH

Well, I’ll have a look

‘Mice’ music from Disney Cinderella

Scene 5: Better home life, Part II

Enter cleaner with feather duster and apron.

CLEANER

Hello luv I’m the bright and cheerful cleaner sent round by social services.

MR SMITH

Gosh, you’re a bit of a stereotype. (pause music)

CLEANER

Well, what do you want, Hedda bloody Gabler? Look, this is a conference, not the National Theatre, darlin’. We might have started off realistic, but if we’re going to finish in 20 minutes, we don’t have time for sophisticated character development.

MR SMITH

Oh, all right, carry on with your absurd parody. (start music)

CLEANER

Cor, what a tip, never mind luv, this’ll be spick and span in no time.

(vacuums and polishes. Exits. Enter Mrs Smith)

MRS SMITH

Hello darling, gosh isn’t it spick and span. Isn’t it great having the cleaner?

MR SMITH

Grunt

MRS SMITH

Aren’t you starting your self-management course on Monday?

MR SMITH

Grunt

MRS SMITH

Did you contact Laurence?

MR SMITH

Grunt

Song ‘I don’t want to talk about it.’

Scene 6: (a couple of weeks later) Self Management course, first meeting

MR SMITH

Now look I’m not really sure why I’m here. I really don’t think anyone can tell me anything I don’t know already.

TRAINER

Well, I’m not claiming to know about your particular condition, but what I can say is that I was really low for several years after my diagnosis, but this programme has taught me a whole load of stuff that’s really transformed things for me.

MR SMITH

I really don’t see how I can make things better. My life’s over, basically. I’m just living from day to day.

TRAINER

Well, try to work out things you can do that’ll make a difference. What sort of things are getting you down?

MR SMITH

Well, the house is such a mess. It looks like a hospital. Pills all over the table, apparatus everywhere, you know.

TRAINER

Yes, we’ve all been there, haven’t we? (they look around at imaginary group) I’m just going to become another person in the group and make a suggestion. (puts on specs and moustache, deep voice) Hi, David, I’m Tim, yeah, man that’s right, my house looked like a chemist’s shop, man. But one day, brainwave, man, I just put all the medicines in a cupboard.

MR SMITH

A medicine cupboard? that’ll look even more like a hospital.

TIM

It’s cool man. Any cupboard will do, it doesn’t have to look like it’s in a hospital, yeah. (becomes trainer again). Nice idea Tim. Maybe you could make that part of your action plan, David?

MR SMITH

Yes, well I suppose it could make a difference.

Curtis Mayfield ‘Move on up’

Scene 7: Better home life, Part III

MR SMITH puts pills away in cupboard.

MRS SMITH

Hello darling, gosh where are all the pills?

MR SMITH

In the cupboard.

MRS SMITH

It all looks a lot better.

MR SMITH

Mm. Yes, it was something that came up on the course. Another thing people there were talking about was sorting out difficulties with travelling. You know, I was thinking about the problem of getting to places, like your mum’s. I’m sure there must be a way of sorting out things so it’s easier for us. I think I’ll go and ask Doctor Rose for advice.

MRS SMITH

Good idea. Hey, why don’t you invite Laurence over for lunch one of these days?

MR SMITH

Yeah, maybe

Beatles ‘Help’

Scene 8: (a few days later) Appointment with G.P

DOCTOR

Mr Smith, come in. Now, how are you getting on?

MR SMITH

Well, basically, I want advice. About travelling. I mean, things always seem to be amazingly difficult, so we end up not going anywhere.

DOCTOR

What sort of things are difficult?

MR SMITH

Well, for one thing, I worry about my medication. I mean, what if I run out while I’m away? Or even lose it all?

DOCTOR

Oh now that’s very easy to sort out. I can give you a prescription you can take to any chemist anywhere in the country. And there’s an emergency number I can give you which means you can access medication and advice day and night.

MR SMITH

Wow, I don’t know why I didn’t ask for this before. What about driving?

DOCTOR

Well, there’s nothing about your condition that means you can’t drive.

MR SMITH

I’m frightened it might just be too painful.

DOCTOR

Well, just take it easy. Start by going short distances, like to the shop. And if you’re doing a long drive, just do half an hour and take it in turns with your wife. Basically, if it hurts, stop.

MR SMITH

Mm, well, I’ll give it a go.

‘I can see clearly now the rain has gone.’

Scene 9: Better home life, Part IV

MRS SMITH

Hello darling,

MR SMITH

Hello darling, how was your day?

MRS SMITH (surprised)

Oh, it was fine, er, thanks!

MR SMITH

Did you get back to your mum about the bank holiday?

MRS SMITH

I thought you didn’t think you could manage it.

MR SMITH

I just saw Dr Rose. Apparently there’s nothing to stop me driving up to your mum’s, as long as we take it in turns.

MRS SMITH

Great. I’ll give her a call.

MR SMITH

It’s OK, I’ll ring her – I want to reassure her about all the equipment.

MRS SMITH (delighted)

OK! And while you’re at it, why not give Laurence a ring?

MR SMITH

Good idea.

Paul Weller: ‘I’m a Changing Man’

Scene 10: Self Management course, second meeting

TRAINER

So how’s your action plan going?

MR SMITH

Well I’m feeling a lot better since I cleaned up the house a bit. Also, I liked Jim’s idea about doing more around the house, so I thought I’d try doing more cooking.

TRAINER

How’s that gone?

MR SMITH

Well, I’ve been watching this Nigella video, but to be quite honest I haven’t really been concentrating on the cooking.

TRAINER

Mm?

MR SMITH

But in next week action plan I’m really going to try to cook myself at least something each day, rather than depend on Catherine all the time.

TRAINER

Well you’d better make sure you exercise if you’re eating lots of Nigella-inspired puddings.

MR SMITH

Mm, well I know that’s important, but the exercises I tried were really painful.

TRAINER

Well, you don’t have to do all the exercises in the book. Just adjust your action plan to do things that suit you. Basically any exercise is good – do whatever feels right for you.

MR SMITH

Mm, well, OK, this week I’ll develop my own routine.

Scene 11: Better home life, Part V

‘Eye of the Tiger’. Mr Smith takes off clothes to reveal Fitness gear. Running and exercising routine.

MRS SMITH

Hello darling.

MR SMITH (panting, hugs her)

Hello darling. Sorry, I’m a bit sweaty

MRS SMITH (sexy)

Mm, sexy. Let’s go and have a shower.

MR SMITH

Mmm. Oh, by the way, I’ve invited Laurence over next weekend.

Marvin Gaye: ‘Let’s Get it On’

Scene 12: (two months later) Self Management course, final meeting

MR SMITH

Well, I just want to say thank you. I’ve learnt a lot in the last six weeks. I was sceptical at first, but you guys really have shown me how take control. Thank you for giving me back my life.

TRAINER

Nice one David, thank god we’re British, or I’d be crying like a girly wuss.

James Brown: ‘I Feel Good’

Scene 13: Fantastic home life

Door bell rings.

MR SMITH

Laurence!

Enter Laurence Llewellyn Bowen for it is he.

LAURENCE LLEWELLYN BOWEN

David! (High fives) OK David, it’s time you got your tool out of your tool-box again.

MR SMITH

OK Laurence. Here goes.

Get’s tool box from under table. They get out four huge power tools.

LAURENCE LLEWELLYN BOWEN

Right David, you’ve changed your life. Now let’s change your room.

David Bowie: ‘Changes’ Very fast transformation of room with the two of them doing camp ‘it’s fantastic’ poses

MR SMITH

Laurence, thanks for changing my room.

LAURENCE LLEWELLYN BOWEN

David, thanks for changing your life.

High fives, Exit LAURENCE.

Enter MRS SMITH

MRS SMITH

Hello darling,

MR SMITH (kissing her)

Hello darling, welcome back.

MRS SMITH (romantic gaze)

No darling, it’s you who’s come back! I’ve got my old David back again.

MR SMITH

Thank god we’re British, or I’d be crying like a girly wuss.

MRS SMITH

Wow, the house looks fantastic. And so do you! And what a lovely smell.

MR SMITH Lifts lid of casserole.

Da daah.

MRS SMITH

Cock au vin, my favourite. Oh darling, how lovely of you.

(they sit down)

MR SMITH

Oh, and your mother phoned. We’re all going over there this weekend.

MRS SMITH.

And she phoned me as well. You know it’s our anniversary next month. Well, she’s treating us to a second honey-moon… in Arizona.

Pulls table cloth off to reveal big Chevvy convertible. They pile all the disabled clobber into the back seat. Put on sunglasses. Drive car. Set collapses to reveal backcloth of Monument Valley.

Scene 10: a surprise second honeymoon in Arizona

The couple drive into the sunset in big open-top car to the strains of Born to be Wild. Big snog. The end.