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Is patient power good for nurses?

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With patient centred cae the focus of government strategies, Richard Staines finds out how increasing public demands and expectations are affecting nurses

The idea of putting patients first is at the very heart of the government’s vision for the NHS. Countless strategies and reorganisations have pledged to place patients at the centre of care.

The idea of initiatives such as the Expert Patient Programme and policy documents such as Our Health, Our Care, Our Say was to replace the old-style NHS – which was based around what was convenient for consultants and doctors – with one that was reactive to the needs of patients. Buzz words such as ‘patient empowerment’ began to reverberate around the NHS as the government attempted to create a health service that responded to patient demand, rather than the old, more dictatorial approach.

In doing this the government has raised public expectations about the kind of standards that patients can expect from the health service.

Couple this with a plethora of readily available information about healthcare and health-related matters from the internet, newspapers and television, and patients have more power than ever before. So, has this helped or hindered the clinical process?

Nurses, in the main, welcome the advent of patient power. They say that they are comfortable with patients having more knowledge about their conditions and how to manage them. As Julie Widdowson, diabetes educator practitioner at Norfolk PCT, explains: ‘It is about patient education. We are trying to get more patients to be looking after themselves.’

Sara Richards, a nurse practitioner at Slough Walk-In Centre, run by Berkshire East PCT, agrees. ‘It’s good – it keeps us on our toes. It means we health professionals think more about what we are telling people,’ she says. ‘It can mean longer consultations because you have to explain what it all means,’ she adds.

On the other hand, patients are more likely to question recommendations. Sheila Flynn, a nurse and assistant director of learning and development at Grooms Shaftesbury, a charity supporting people with disabilities, says: ‘They do challenge more but I don’t have a problem with this if it is done in the right way.’

Ms Flynn adds that family members are also more likely to raise matters. ‘I find relatives are more challenging than the patients but it is a good thing that they’re prepared to stand up for them,’ she says.

Nurses say that patients become distressed and confused if they are not treated with respect and if clinicians fail to communicate properly with them – which means the onus is on nurses to ensure their interpersonal skills are polished.

Patients who feel they are not receiving the right levels of service may become angry and emotional, nurses warn. ‘If you don’t treat them right, they may become aggressive,’ says Ian Pomfret, continence adviser at West Lancashire PCT.

An additional complication is that not all the information out there is accurate – and, even when it is, patients can easily misdiagnose what is wrong with them.

Jane Scullion, respiratory nurse consultant at University Hospitals of Leicester NHS Trust, cites the recent example of Liz Dawn – the actress who plays Vera Duckworth
in ITV soap opera Coronation Street – who has quit the programme because she has COPD. During an emotional TV interview with Sir Trevor McDonald, Ms Dawn revealed that she was suffering with the condition.

Ms Scullion spoke of the consequences: ‘I had people who had watched the programme phoning me up to say that they [realised that they too] had COPD.’

That said, she welcomes the fact the TV interview raised awareness of the condition. ‘Some patients said it helped as they identified with her,’ she says. ‘She was probably the first [public] person who people could identify with.’

TV and the internet can produce mixed and misleading messages about diseases, drugs and treatments. Ms Scullion says information from many clinical trials is often exaggerated and sometimes misrepresented in the national press.

‘We do get people coming in waving their newspapers around,’ she explains. ‘But some people have no idea about things like sample size. They don’t realise a treatment might be several years away from being useful for anybody because the article often doesn’t say that.’

Mr Pomfret warns that TV advertising can also be unhelpful. He says, for example, that it is one thing to raise awareness about products for people with continence problems but what is often not made clear is that the product alone will not cure the problem. With something as embarrassing as a continence problem, he explains, adverts can instead serve to drive the problem underground. ‘Sometimes people don’t come forward with their problem until it is too late [to do anything about it],’ he says.

Information presented on the internet may not always be reliable, other nurses warn. Although some sites are of a high standard, not all are peer reviewed and not all of the information is accurate.

Ms Richards says that there is still information online based on a now-discredited article from The Lancet linking the MMR vaccine with autism in children.

‘People who really explore the subject find the right information. But people who just go onto a couple of websites find the wrong information about the jabs. You have to tell them it is not right and show them the proper website to use. They bring in all their beliefs from what their grandmother told them and get it all muddled together – you have to be careful about that.’

The information that patients find may also be inadequate or will not necessarily give them the whole picture. In the field of diabetes, for example, Ms Widdowson
says that many patients do not understand that managing the condition involves much more than simply avoiding sugary foods. They fail to realise that other food types can also have a large impact on blood sugar levels – and therefore have implications for glycaemic control in patients with the condition.

‘The common problem is people think that as soon as they stop eating all sugar, the diabetes will solve itself. They don’t realise that carbohydrates drive their blood sugar levels up,’ she says.

Perhaps the biggest pitfall of the NHS’ focus on patient-centred care is that many people simply do not seem to understand the system, nurses warn. They may not even be aware of what the NHS is. There can be a number of reasons for this – they may be from another culture and have recently entered the country, for example.

It is exactly these patients who are likely to need healthcare services, and nurses must actively reach out to them to ensure they receive the care they require. In addition, extra effort must be made with groups of people who are socially marginalised and may not have access to the internet, may not read newspapers
or other information and may not understand English.

Pauline Kingston, senior lecturer at Anglia Ruskin University’s faculty of health and social care, urges health professionals to remember that many people may still lack knowledge because they do not have access to healthcare information. The danger with the current health-service philosophy is that nurses could begin to expect all patients to have high levels of knowledge about their condition, she adds.

‘They may assume that everybody has access to the internet but there are people who either can’t use it or don’t know how,’ she says.

And, just as some doctors or nurses may have an old-school dictatorial approach towards care, it is clear that some patients prefer the kind of treatment whereby they are simply told what is wrong and what to do to help make it better.

Depending on their background and culture, some patients still prefer the old ways. Ms Widdowson says that some patients with diabetes look to her for answers, instead of wanting to find out for themselves. ‘Despite the government rhetoric, not all patients are actually comfortable with being in control of their own care,’ she says. ‘I think some patients still go out to be told what to do.’

But many patients believe they should have more say on how they are treated, which is leading them to demand inappropriate treatments.

This is particularly true in an area such as continence, where patients are exposed to a wealth of advertising for different products, warns Mr Pomfret. ‘Patients may want a continence appliance that isn’t always appropriate, rather than the one that I have professionally recommended to them,’
he observes.

There is also anecdotal evidence that some people ask for antibiotics when they are not necessary. A lack of uniformity in how antibiotics are prescribed can confuse patients, says Ms Flynn.

‘Within the NHS you have got GPs who will prescribe antibiotics for anything. There needs to be more education about them,’ she adds.

As far as A&E is concerned, the jury is still out on whether encouraging patients to be masters of their own destiny has ramped up demand for emergency services and resulted in inappropriate attendances. Mr Pomfret, who wrote a research paper about this very issue in the 1970s, says: ‘Patients always went there for inappropriate things – that was a problem 30 years ago. That is nothing new.’

Overall, nurses report that they are enjoying the challenge of dealing with patients who are, on the whole, more educated and aware of their conditions.

Mr Pomfret says: ‘People are more questioning, better educated and they know their rights. Patients are on the internet and they know what is out there. They are more likely to complain but that is what we have encouraged them to do. It is a challenge more than a burden because there is a lot more aspiration and expectation – even though sometimes you can’t meet this.’

In fact, Mr Pomfret even suggests that increased patient expectation and dissatisfaction could benefit nurses: ‘Complaints [that services cannot match demand] may not necessarily be a bad thing for nurses who are under increasing pressure to justify their existence. I wish they would complain more and then we would get more for our continence service.’

The new patient-focused ethos of the NHS has created challenges but also has rewards for nursing. As patient advocates, this new approach gives nurses an opportunity to show their worth and really make a difference in shaping the services that patients receive – even if they are simply advising patients on how to get the most
out of their local services. The new patient-centred health service may mean that the skills of nurses and the profession are in greater demand than ever.

PROS AND CONS OF MORE MEDICAL INFORMATION BEING PUBLICLY AVAILABLE

Advantages

  • Patients are more knowledgeable about their illness

  • Patients are more likely to take on responsibility for self-care

  • Nurses are kept on their toes by patients who are challenging care

  • The more demands a service receives, the more likely it is to attract funding

Disadvantages

  • Patients are misled by inaccurate information

  • Patients can become angry and offensive when they are making their demands

  • Patients may demand inappropriate treatments or products

  • Inequality is created as not all patients have access to modern media

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