How to pin down ‘butterfly’ care

An evaluation tool funded by the Department of Health has been developed to help hospitals check how well they are implementing the Butterfly Scheme, a system that enables staff to identify people with dementia and address their needs. The tool gives feedback on things staff are doing well and what steps to take next, encouraging continuous improvement.

Any nurse working in a hospital will be aware of the scale of dementia on the wards. Up to a quarter of beds are occupied by people with dementia; they are likely to stay in hospital longer than other patients, and have a higher risk of being readmitted and dying in hospital.

So it is no surprise that a key demand of the Prime Minister’s Challenge on Dementia 2020, published in February, is improving the hospital care of people with dementia.

Many hospitals have long been aware that they need to do more for these patients. Almost 150 hospitals have signed up to the Butterfly Scheme, a system of hospital care for people with memory problems held up as a beacon of good practice in the Challenge on Dementia.

A new, interactive online evaluation tool funded by the Department of Health aims to help hospitals using the scheme audit and further improve their care of people with dementia.

The Butterfly Scheme (butterflyscheme.org.uk) was developed by former teacher Barbara Hodkinson, who cared for her mother, who had dementia, for 13 years.

Ms Hodkinson noticed that NHS staff rarely took her mother’s dementia into account. She analysed what went wrong after a hospital stay that should have lasted five to seven days after a knee operation stretched into 22 days. While the manifestations of poor care were many, they could all be traced back to a few root causes.

One example was history taking. ‘Anything to do with the past is difficult,’ Ms Hodkinson says. ‘Asking “how long have you had this pain?” or “have you drunk enough?” will not elicit the answers needed.’

She felt that the skills needed to address the problem could be taught. So she worked with the hospital, and with nurses, carers and people with dementia, to develop a scheme to see situations through the eyes of the person with dementia.

Hospitals sign up to the Butterfly Scheme and appoint a lead nurse. All staff who work with people with dementia – from porters to housekeepers to nurses – receive training to offer a targeted care response.

‘It’s about helping people to think about things differently,’ explains Ms Hodkinson. ‘Thinking “how do I work with a person with dementia and undertake therapy or activities with them and reassure them?”’

Evaluating dementia care in practice

Lucy Frost, dementia champion and nurse specialist at Brighton and Sussex University Hospitals, says introducing the Butterfly Scheme across two hospital sites with 800 beds, as well as associated outpatient departments, has been complex. The evaluation tool has helped her to understand how the scheme is affecting quality.

Picture credit: Alamy

She has used the tool to compare the quality of care on the specialist dementia unit with that on a general older people’s medical unit. ‘We found they were quite similar and that has allowed me to say that with the Butterfly Scheme in place, the care for patients in a non-specialist area can be just the same as in a specialist area.’

An audit in audiology found that many people with undiagnosed dementia were being seen in the department; now staff can direct them to relevant services. Ms Frost has used results from the audit in her annual report to boards, as well as in regular reports to commissioners, non-executive directors and regional bodies such as the Academic Health Science Centre. ‘Senior managers like data. This gives you data,’ she says. She emphasises it is not hard data about length of stay or cost reduction, but about quality.

The tool is easy to use and its feedback leads to actions. ‘We need governance but we need useful governance,’ Ms Frost says. ‘This is useful governance.’

Patients opt in to the scheme, agreeing to have a discreet butterfly symbol displayed nearby that alerts staff to their memory impairment. Carers fill out a sheet, offering tips on what will make life easier for the patient and staff caring for them.

With so many hospitals using the scheme, Ms Hodkinson felt it was time to develop an evaluation tool to provide staff with feedback that would help them to further improve care.

Patients with memory problems will struggle to answer nurses’ questions

Picture credit: Alamy

Janet Farnhill, who piloted the scheme at Harrogate and District NHS Foundation Trust and is now senior nurse for adult safeguarding and named nurse for learning disabilities, did much of the development work.

‘The idea was to look at how the Butterfly Scheme works in practice, at ward level and department level, and to ask what patients, carers and staff feel about it,’ she says.

The evaluation tool needed to be easy to use and the feedback actionable. Ms Farnhill developed forms asking questions of three groups: carers and patients; NHS staff; and ward leads or local Butterfly champions. She then mapped out all possible responses and developed tailored recommendations for each one. This was worked into software with the help of IT consultant Kirti Tandel at Mednet.

The result is a web-based evaluation tool. Evaluation starts with feedback forms where patients and carers are asked questions such as:

Was the Butterfly Scheme offered promptly?

Was the information on the carer sheet you completed acted on?

Was it implemented by all staff?

Staff are asked if they enjoy the scheme, and if it helps them care for patients and improve links with families and carers.

Ward managers or Butterfly champions on wards also fill in an observational form, which looks at whether all eligible patients have been offered the scheme and all staff have received Butterfly training.

An entire department, a ward or whole hospital can complete the forms. The lead nurse then collates answers, feeds them into the website and it creates a report that provides feedback about what is going well and what staff need to do next.

‘The idea was to look at where people are doing well, to say well done, and give them action points about how to improve further,’ says Ms Farnhill. ‘This is not often done in the NHS.’

Ms Hodkinson says more and more hospitals are now using the evaluation tool, and as a result improving the care they offer to the ever-rising number of patients with dementia.

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