Award winners create a framework for better care
A team of four consultant nurses who created the Health Equalities Framework (HEF) was named winner of the Learning Disability Nursing category at the RCNi Nurse Awards last month.
The HEF is an outcomes measure created to improve the healthy life expectancy of people with learning disabilities – which is many years shorter than that of the rest of the population.
The team, comprising independent nurse consultant Dave Atkinson, 2gether NHS Foundation Trust non-medical consultant Crispin Hebron, Surrey and Borders Partnership NHS Foundation Trust professional lead Phil Boulter, and South Staffordshire and Shropshire NHS Foundation Trust clinical director and consultant learning disabilities nurse Gwen Moulster, impressed the judges for the Cambian-sponsored award. They said the team created a person-centred framework that shows the effectiveness of learning disability nursing and has improved care.
Specialist judge Simon Jones, head of behavioural support at Care UK, says: ‘This is making a big difference.’
The team had taken up a challenge from Department of Health mental health, learning disability and dementia care professional officer Ben Thomas to come up with an outcome measure. ‘This team really exceeded my expectations,’ Dr Thomas says.
‘The HEF not only shows the difference nurses can make, but can be used by the multidisciplinary team to make a difference to the quality of people’s lives. We have to do more to reduce the health inequalities experienced by people with learning disabilities, and using the HEF will help us do that and lead to real change.’
This was the driver for the nurses’ work, undertaken mainly in their own time. Mr Atkinson says: ‘The health inequalities experienced by people with learning disabilities are essentially manmade. They are unjust and avoidable, and nurses can lead the way in reducing them.’
The framework, which is based in Microsoft Excel and available for free, sets an idealised but evidence-based standard, or ‘zero position’, that reflects the priorities of service users and families and aligns with national policy.
Service users are judged to be in the zero position if they:
- Live in settled accommodation.
- Are supported to engage in activities.
- Can maintain and develop relationships.
- Are protected from discrimination and abuse.
- Have their needs assessed and formulated.
- Have health action plans and hospital passports with regular reviews.
- Are given medication judiciously.
- Have access to specialists.
- Receive support to communicate.
- Have well-informed and responsive carers.
- Have their choices honoured.
- Lead healthy lifestyles.
- Have unrestricted access to generic services.
- Are supported during transitions.
- Can access screening programmes.
- Can access health promotion material.
The framework can aggregate data to help improve planning, commissioning and public health strategies (see case study 1). It can identify the level of complexity in the caseload for an individual, team or whole service, and highlight where some nurses are having more impact than others and why.
The HEF can also be used to measure a person’s exposure to known determinants of serious health inequalities, by rating against 29 impact scales (see case study 2).
Mr Atkinson says: ‘Most practitioners, after profiling, then amend care plans to shift high scores towards low scores. In this way we would always say “profile someone today and you will support them a little differently tomorrow”.
Case study 1
Aggregated data from a large NHS provider in England showed that of the 300-plus people using its community services, 35% had a severe learning disability, 56% presented with challenging behaviour, 15% had sensory impairment and 17% nutritional problems.
The community teams made the biggest impact in reducing the likelihood of serious future health inequalities by decreasing the effects of exposure to genetic and biological determinants, and struggled most with reducing the impact of lifestyle behaviours.
Teams were highly successful at supporting access to mainstream services, but they sometimes struggled to ensure smooth transitions between services and to support people to engage in less hazardous sexual health behaviours.
The teams were fairly equally effective, regardless of their patients’ age, gender or reason for referral. People with more severe learning disabilities achieved the greatest benefits from the support they received.
Three of the four teams consistently reduced the likelihood of health inequalities, but one struggled to achieve similar gains. Following further analysis of the data, managers and commissioners have been able to support this team with extra capacity to meet the specific, distinct needs of its service users.
‘The beauty of the HEF is that for the 20 minutes it takes to profile someone, there are so many potential gains for patients, nurses and services.’
The HEF can be used in different ways, depending on the user, whether nurse or parent. Its flexibility means service users can access it too, and it helps to empower them.
Mr Atkinson says: ‘There has been some fantastic work in a Scottish palliative care service, which revealed unintended benefits of using the HEF in terms of guiding practice, informing decision making, and reassuring nurses about the merits of their practice in what is a pretty tough field.’
Pilot for children
Mr Atkinson and his colleagues have taken the framework to Finland and Australia and developed an e-learning resource. They are also looking at piloting a children and young person’s HEF and are in talks about a web-based version, with an app to follow. However, the team is determined to keep a free version, as Ms Moulster explains: ‘We do not want to exclude families or nurses in a small organisation from using it.’
The HEF has been piloted in all four UK countries, with each subsequently taking a different approach to its roll out. It is recommended in numerous health guidelines and trusts, and for people in prison. And last year it was updated and relaunched to incorporate the evidence base and key lessons from early implementers.
'Information they can use'
Ms Moulster says the key to its success, in part, is that ‘it is not just a tick-box exercise’. She adds: ‘Practitioners are keen to use it as soon as they see it gives them information they can use, and families and carers can see how it can help. All we want in our profession is to get it right.’
Community learning disability nurse Mary Fairgrieve agrees: ‘It is a great signposting tool, but it is also raising the morale of learning disability nurses.
‘At times, it can feel like we are being beaten with a stick when we are working incredibly hard. Before the HEF nobody could see how well we have done. Everyone has embraced it because it works.’
Case study 2
Antonia, who has a severe learning disability and autism, experienced sudden onset renal failure in 2012. The 25 year old was anxious and frightened of anything to do with health care.
Her phobia of needles, even plasters, meant she needed a general anaesthetic for routine blood tests and blood pressure monitoring.
Antonia’s care plan included de-sensitisation work, building relationships with carers, and support for healthcare professionals to ensure decisions were made in Antonia’s best interests. Community learning disability nurse Mary Fairgrieve says: ‘We did a lot of work. I would meet Antonia at the hospital “accidentally” and say, “Why don’t we just go to the ward for a look?”. Steps were taken to do blood tests and blood pressure – vital to her treatment plan – at home.
‘We were taking bloods with a clinical hold, which might sound traumatic but was better than the impact on Antonia of a general anaesthetic and feeling groggy for days. Her medication was more appropriate; previously her blood pressure was a bit of a guesstimate as she would not tolerate having it done.’
However, Antonia’s kidneys deteriorated. She needed dialysis within three days or the team would have to start planning palliative care. ‘When I saw the dialysis unit I nearly cried. I could not believe she would tolerate it,’ says Ms Fairgrieve. ‘But with much work, she did.’ The next step was a successful transplant, for which Antonia spent eight days in hospital. She now attends her local hospital for regular blood tests.
‘I so enjoyed working with Antonia and it was such a good outcome. And I could show what an impact we had made by using the Health Equalities Framework.
‘Before, nurses did not have anything to measure their effectiveness. You would know you had done a good job, but there wasn’t anything formal to show it.’
For Ms Fairgrieve and her team the framework ensures needs are prioritised accurately. ‘We have a multidisciplinary intake meeting once a week and a HEF is done for all new referrals,’ she says.
‘All practitioners use it, including therapists, psychologists and psychiatrists. Then at the end of the intervention we measure to see how effective it has been.
‘With the different domains, you can see where needs lie. In Antonia’s case, the genetic and biological section showed most need so a nurse was the right person to provide care. But sometimes the HEF scores higher for a previously unidentified issue. If the social section scores highly, you can refer for a social needs assessment.’
Learning Disability Practice would like to thank Cambian for sponsoring the Learning Disability Nursing award at the RCNi Nurse Awards 2016