The epilepsy services scenario




Дата канвертавання19.04.2016
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The epilepsy services scenario

Context: Ferndale Primary Care Trust, a local healthcare policymaking body, in charge of providing, funding and commissioning healthcare services for about 200,000 people.


Dramatis personae:

BOB = Dr Bob Dawes, Director of Health Improvement

PAULINE = Pauline Drummond, specialist learning disability nurse with interest in epilepsy

FRAN = Fran Dobson, Director of Nursing



JILL = Researcher


BOB

Hi – sorry I’m late. And I’ve got to be out of here in 20 minutes. I’m chairing the Priorities Forum.

JILL

Priorities Forum – what’s that?

PAULINE

It’s a bit of a euphemism really. It’s a committee where they decide what services to withdraw funding from. And if they manage to find something to stop funding, they can also consider proposals for new services.

JILL

How do they decide what to stop funding and what they might start funding?

BOB

Oh, it’s completely evidence-based. If the service isn’t clearly effective – and cost effective – we shouldn’t be funding it. We have to be hard nosed about that. So for example we’d ask one of our academic colleagues to look up the research literature. I get a lot of flak from the Save Our Homeopathy Service pressure groups, but in the end, if it’s your homeopathy or old Mrs Bloggs’s hip replacement, the Priorities Forum is going to go for the one that’s evidence-based. No gut reactions or single-issue campaigners – just a proper weighing up of the evidence. You know – randomised controlled trials as the best evidence, then maybe cohort studies, with anecdotal stuff at the bottom of the hierarchy. In the past three years we’ve set up smoking cessation clinics, diabetic eye screening, and a completely revamped drug and alcohol service, purely on the savings made by withdrawing things that never did people any good.

JILL

What services did they withdraw to fund all those new services then?

BOB

Oh, that all came from closing down that dreadful residential unit for teenage girls with anorexia nervosa. You see, inpatient treatment is incredibly expensive, and actually the trials show it’s no more effective than seeing the kids in outpatients. They were using it like a hotel. That one decision saved us a quarter of a million a year.

JILL

I see. So what’s on the agenda today?

BOB

The main thing is the epilepsy service.

JILL

What’s the problem with epilepsy?

FRAN

Well, you know what epilepsy is, don’t you? It’s not just grand mal fits, there’s a lot of people who have blackouts and funny turns, and it’s more common in elderly people. Because the population is getting older, epilepsy is getting commoner.

JILL

And what’s the problem with the service?

PAULINE

Service? There is no service for people with epilepsy! At least, that’s what the patients say. I mean, they get seen – or some of them do – by the neurologist in an outpatient clinic once a year, and if someone has a fit in the street, they get taken off by ambulance to casualty. You know – admit for observation, sleep it off and take up a bed for two days when all they really needed was someone to take them home and their GP to sort out their tablets.

JILL

Why doesn’t that count as a service?

BOB

Well, you should have been there the other night when I went to that meeting of the Ferndale Epilepsy Forum at the Town Hall. I wish I hadn’t worn my best suit – they threw tomatoes at me!

JILL

Why?

BOB

[quotes] “Impossible to get an appointment at the clinic”, “No helpline for parents of children with epilepsy”, “GP doesn’t understand the drugs I’ve been prescribed by the specialist”. You name it, they weren’t happy with it.

JILL

Well, what did they want?

BOB

They want a specialist nurse, based at the hospital but working mainly in the community, who would be available on the phone, who would visit people who have problems and sort them out on an individual basis. She could fast-track people she was worried about to the consultant.

JILL

That does sound like a good idea.

FRAN

The district nurses won’t like it. They say the patient is a whole person and the point about primary care nursing is you treat the person, not the disease. Otherwise – this is the district nurses’ argument – a patient would have one nurse for their head, one for their middle, and one for their feet, and the patient’s home would be like Piccadilly Circus as the different nurses came and went.

JILL

But surely the district nurses could co-operate with the epilepsy specialist nurse, and share the work about in a way that still provided holistic care?

FRAN

That’s what all the specialist nurse people say. But in the end it’s eroding the role of the generalist district nurse. A good district nurse should be providing support and referring anyone to a specialist consultant if she picks up a problem that needs seeing urgently. That’s what they mean by treating the patient rather than treating the disease.

BOB

There’s also the small matter of the evidence base

JILL

Yes, what is the evidence base for epilepsy nurses?

PAULINE

I did my Masters thesis on epilepsy, and I found loads of good research papers that support the idea of a specialist nurse for epilepsy.

JILL

What sort of research papers?

PAULINE

There are at least ten surveys of patients and their carers, with questionnaires and semi-structured interviews, that sort of thing, and they all say the same thing. Having the nurse there makes them more confident, increases their understanding, and picks up side effects so their medication can be changed if necessary.

BOB

That’s all very well PAULINE, but you know what the randomised trials showed?

PAULINE

Yeah, they didn’t show much really, did they?

JILL

What did they show?

BOB

There were three randomised trials, of which one didn’t really count, because it was simply replacing a doctor with a nurse in the hospital clinic. The other two trials – of which only one was properly published in a Kosher academic journal – showed that patients randomised to be cared for by the nurse didn’t have better knowledge scores or fewer fits or more rational medication regimens than patients randomised to the control group.

JILL

So were there any positive effects of the nurse in those trials?

BOB

No! They measured about ten different outcomes and they all came out as non-significant. Even the meta-analysis was non-significant.

PAULINE

Yes, but it wasn’t much of a meta-analysis, was it? Two underpowered randomised trials making one underpowered meta-analysis. And also, the patients in those trials weren’t at all typical. In one trial a third of them were kids with learning difficulties and in the other, they only included people with a new diagnosis of epilepsy referred from the hospital clinic. Well, all of those would have just seen a nurse anyway so the control group wasn’t a true control.

FRAN

PAULINE, don’t you think you’re being a bit biased here? I mean, if the randomised trials had gone the way you wanted them to go, you’d have said the RCT should be the gold standard. But because you don’t like the findings you’ve gone for the qualitative studies.

PAULINE

It’s true, I don’t really trust those randomised trials after talking to the patients. I mean, when I worked in Brent, we had four specialist nurses and they were absolute gold dust. They kept people out of hospital, they kept kids in normal school who would otherwise have gone to special schools, and the patients absolutely swore by them. And the nurses went on holiday, you knew there’d be more people dropping down with fits in the street.

BOB

Did anyone ever measure that?

PAULINE

Not formally, no. But because they gave such a good service, an obviously good service, and everyone valued them, nobody in Brent would even think of withdrawing them. And thank God there’s no Priorities Forum in Brent!

JILL

But if epilepsy nurses give such a good service and are so valued, how come the randomised trials didn’t pick it up? Weren’t they designed properly? Should we do another randomised trial with more appropriate outcome measures?

PAULINE

But the way I see it, we shouldn’t be wasting time or money on doing another randomised trial. There’s a national policy directive – part of the National Service Framework – that says all districts should set up an epilepsy specialist nurse service by July 2005.

BOB

Oh, that’s so typical of bloody New Labour. No hard evidence, so they just bow to public opinion. In comes epilepsy nurses on no good evidence, so out the window goes old Mrs Bloggs’s hip replacement for another six months.

JILL

So what do you do now? Implement the policy locally because of the national directive, or tell the Priorities Forum that the randomised trials don’t support it?

FRAN

Don’t forget we have a local policy not to appoint any specialist nurses.

BOB

Yes, that’s very important. I don’t want to get on the wrong side of Alison and her friends.

JILL

But is there any evidence to support generalist nurses rather than specialist nurses?

FRAN

I really don’t know. But it’s certainly the way people think round here.

BOB

In any case, we haven’t got time to start looking for another pile of evidence. The Priorities Forum starts in two minutes so we’re going to have to go in with what we’ve got.

JILL

And what evidence do you have?

BOB

Two rather dodgy randomised controlled trials showing no significant impact of epilepsy nurses, ten qualitative studies which all found that patients want epilepsy nurses and feel better if they have one, one petition from local patients with three hundred signatures, Pauline’s stories about how it all works well in Brent, and an e-mail suggesting that there’ll be a go-slow by our local district nurses if we approve the policy in Ferndale.


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