CSP research adviser Gabrielle Rankin discovers an inspirational project to improve the respiratory health of people with a learning disability
Health related outcomes for people with a learning disability are shocking. People with a learning disability die, on average, 24 years earlier than those in the general population. What’s more, 49 per cent of these deaths are avoidable compared to 22 per cent in the general population.
Donna Smalley, a physiotherapy professional lead, and Tracey Barningham, a community matron, at Bradford District Care NHS Foundation Trust (BDCT), have more stark data to share when I speak with them about their project, Keeping My Chest Healthy (KMCH), which is designed to address these health inequalities.
The data shows that people with a learning disability from Black, Asian and minority ethnic communities have poorer access to and experiences of healthcare services and poorer health outcomes.
For the population with a learning disability that Donna and Tracey serve in Bradford, the average age of death for a white British person was 56 in 2022, in comparison to 26 for someone from a Black, Asian and minority ethnic community. In terms of analysis, this was based on a small number of LeDeR reviews; however, this is still a shocking statistic.
Donna’s tips for getting started
- Start small – look at your local data and identify a need.
- Don’t get overwhelmed and take it all on at once.
- Constantly demonstrate the needs and benefits of what you are doing.
- Smalls amounts of funding and protected time can build incrementally.
- Work collaboratively with service users and across the MDT.
Formulating a multidisciplinary response
To address these concerning health inequalities, the learning disability health support team at BDCT set out to reduce the number of chest infections, hospital admissions and avoidable deaths and improve quality of life among people with a learning disability.
Their first step, starting in 2019, was to develop a respiratory pathway, which was evaluated and refined over time to ensure that it met individuals needs and produced positive health outcomes.
The result is a multidisciplinary (MDT) respiratory pathway based on best practice and incorporating guidance from the British Thoracic Society.
‘The goal is to shift focus to health promotion and prevention of respiratory illness rather than responding to health deterioration’, says Donna.
‘Using a holistic MDT assessment and a risk identification tool, it offers bespoke Keeping My Chest Healthy care plans which are accessible and user friendly.
As the pathway developed, the team recognised the need for increased awareness about the risk factors that can impact on respiratory health as well as educational resources for people with learning disabilities, their families, carers and healthcare professionals.
‘We wanted to create a ‘digital hub’ where all respiratory care information was consolidated, accessible and translatable,’ Tracey explains.
‘The project started initially with no funding,’ says Donna.
‘Once we were able to demonstrate both need and benefits, we were successful in getting funding from a Personalised Care Funding bid in 2022 to develop the digital hub, and this was then matched by BDCT for a small amount of protected time.’
Getting protected time as well as funding is vital, Donna emphasises, for those considering any sort of similar approach to theirs.
This year, Donna and Tracey successfully secured more funding to further develop the digital hub with other languages alongside English. The funding will also be used to create online training modules to demonstrate how to deliver the pathway; and provide a digital version of the care plan.
The bid was based on need, Tracey explains. ‘We recognised that the training modules would ensure sustainability of the KMCH pathway within the Trust and increase efficiency of training new staff.
‘Then we started getting enquiries from outside the Trust wanting to use our pathway and resources. We realised our training modules could also support other services, so they are not starting from scratch’.
All these resources will be available within the ‘clinical professionals’ area on their website later this year. They are also considering creating a ‘white label’ version of the website for others to brand and include local resources and services.
Patient Story
This story is from the father of a young man who had experienced the trauma of many unplanned hospital admissions. He had been told on more than one occasion that he should prepare himself to say goodbye to his son.
By completing the respiratory pathway scoring, risks were identified in several areas. The MDT’s work could therefore focus on reducing specific risk factors.
In the 12 months prior to referral, the patient had four chest infections requiring antibiotics, five hospital admissions for aspiration pneumonia and spent 59 days in hospital. In the 12 months following completion of the respiratory care plan, he experienced no chest infections or hospital admissions. This made a huge impact on the family and their quality of life. The father of this man said ‘…Thanks to you, we have probably stayed out of hospital 6-7 times…’
The financial cost of the of the five hospital admissions was £57,084.
Co-producing a digital hub
The digital hub contains a library of educational materials, health resources and videos. It is open access and available on all platforms. The whole project was co-produced by a focus group of experts by experience – people with a learning disability, their families and paid carers from a number of different settings as well as healthcare professionals with clinical expertise. This collaboration ensured that the digital resources were accessible to these audiences.
The platform has been developed collaboratively with the University of Bradford Working academy and uses AI avatars with potential to speak over 120 different languages. Videos are currently available in English and Urdu.
Tracey explains the huge benefits of the digital hub. ‘The hub can be accessed through a QR code on care plans, and it provides 24/7 support for all service users as well as care teams, with reminders about training and how to use equipment’.
‘It is especially valuable when there are transitions between services. The videos provide information in different spoken languages, not just a written format. Any changes to information can be quickly updated. Using digital care plans later in the year will also have massive impact, they will be easy to complete and update and packaged in a way that can be shared outside patient record systems.’
Aware of digital inequalities, the team demonstrate and support setting the resources up onto phones when needed. They always provide paper resources as well if required.
Impact
- To date 140 people have been supported through the pathway and have a respiratory management plan in place. Data from a random sample 12 months after following their care plan.
- 54 per cent reduction in chest infections treated with antibiotics.
- 70 per cent decrease in hospital admissions.
- A conservative estimate for a hospital admission for a community acquired pneumonia is £7,000.
This is based on an average hospital stay of seven days but is often longer and more complex for people with learning disabilities.
Donna and Tracey are currently developing their evaluation of the digital hub as well as carbon savings.
The impact of the initiative has also been recognised by an HSJ Patient Safety Award – with the Keeping My Chest Healthy Project winning in the category of Learning Disabilities Initiative of the year. This story is from the father of a young man who had experienced the trauma of many unplanned hospital admissions.
A fantastic learning resource
Commenting on the respiratory hub, CSP research adviser Gabrielle Rankin says:
‘What an amazing service! The Bradford team are sharing fantastic learning and resources for all physiotherapy services who serve people with learning disabilities and especially for respiratory services. They demonstrate the huge impacts of redesigning a care pathway to focus on prevention and health promotion rather than responding to acute respiratory problems. The benefits of co-producing their digital hub are striking, also, the role of AI technology in providing written and spoken information in different languages.’
Feedback from service users, families and carers
- Increase in their own knowledge.
- 40 per cent increase in the confidence they feel in providing the right respiratory support.
- 30 per cent increase in the confidence they had in others to be able to support the person they care for effectively.
More information
- Take a look at digital hub and signpost it others.
- LeDeR Report 2022 (published November 2023), King’s College London et al.
- British Thoracic Society Guidance BTS Clinical Statement on Community Acquired Pneumonia in people with Learning Disability and BTS Clinical Statement on Aspiration Pneumonia, British Thoracic Society, Better lung health for all.
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