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Improving the health of people with learning disabilities

Hft has completed a pilot project, which aimed to address the health inequalities faced by people with learning disabilities. Will it help to tackle this ongoing issue?

In early April, NHS Digital published its latest data on Health and Care of People with Learning Disabilities: 2015-16. The report identified potential differences in the treatment, health status and outcomes for people with learning disabilities, compared with the rest of the population.

It found that life expectancy for people with learning disabilities was between 14 and 18 years shorter than for the general population; and only 46% of patients with a learning disability, who were known to their GP, receive an annual health check.

Health inequalities facing people with learning disabilities have been reported for many years and although they should be receiving health checks, figures show that this isn’t happening.

Technology pilot

To address this, Hft has developed an approach to discover insights into people’s health and wellbeing, to reduce health inequalities, using technology to improve outcomes.

Funded by the Health Foundation, as part of its £1.5m Innovating for Improvement Plan, and led by Hft’s Personalised Technology team, the project involved two groups of 20 people with learning disabilities who are supported by Hft. One group lives in supported living in Gloucestershire and the other attends day services in Bradford.

Sarah Weston, Innovation Manager at Hft explained, ‘The overall aim of the project was to reduce people’s exposure to health inequalities and find out more about their health and wellbeing so that we could look to improve it.’

How it worked?

The pilot uses Lincus, a picture and simple word-based application for recording information about health and wellbeing. It can enhance communication between practitioners and people with learning disabilities by allowing both parties to gain more insight into how the person is feeling.

Sarah continued, ‘Lincus is a self-reporting application, run through a web browser. It is a series of short surveys about people’s general, mental and emotional health.’

In the pilot, Lincus was brought together with the Health Equalities Framework (HEF), an outcomes framework based on the determinants of health inequalities developed by NDTi, Improving Health and Lives: Learning Disability Observatory and the UK Learning Disability Consultant Nurse Network.

Sarah added, ‘Hft has been working with Rescon, creators of Lincus, for a couple of years and once we saw the HEF, we thought there was potential in combining the two systems to see if there was an opportunity to use them to improve the health and wellbeing of people with learning disabilities.

‘HEF was originally created on an Excel spreadsheet. We integrated it into the Lincus platform, making it more accessible and the information easier to collate. We worked with two groups of 20 people that we support and completed a HEF assessment for each participant and then used Lincus with them daily.

‘The HEF looks at people’s exposure to known determinants of health inequalities, such as suitable housing, genetic factors or having access to accessible health literature or screenings.

‘Lincus is a series of four surveys: general health, which looks at things like levels of tiredness, comfort and appetite; mental health, which looks at issues such as mood, stress and engagement; social life, which looks at issues such as loneliness and time spent with family; and emotional health, which looks at levels of anger, excitement or how supported someone is feeling.’

The information is all collected via the Lincus platform, which Hft used on tablet devices. This enables them to record data at the point of collection instead of returning to the office to record it.

Participants’ involvement

Hft used the system with a variety of people with differing support needs. Sarah explained, ‘Most people needed some extra support to use the system. However, most participants enjoyed using it and it provided valuable insights into their feelings and the impact of changes in support. In the Gloucestershire site, people began to ask staff if they could use it more regularly.’

Pilot results

One of the key findings from the project was establishing where responsibility for people’s health needs, outside of social care, should lie.

Areas were identified where additional support was needed, such as help with accessing the dentist and ensuring equipment was routinely serviced, which are not traditionally part of a day service. Staff used these opportunities to help educate families and carers to ensure gaps in support would not arise.

Sarah explained, ‘We now know more about people’s health and wellbeing and can, therefore, offer them better support. For example, our work in Bradford revealed that some people weren’t accessing regular dental or hearing checks, areas which are not a part of Hft’s day service remit. However, the day service was then able to support families or other providers to make sure people were accessing the appropriate services.

‘Overall people’s health and wellbeing improved and their exposure to health inequalities was reduced. The project also highlighted the importance of suitable housing (a large number of the group moved house during the trial, which led to improvements in their health and wellbeing), as well as the role of day services in people’s wider support.

Hft has already used the system in other services and it has enabled people to input directly into the surveys to build a picture of their health and wellbeing, which can then be acted upon.

Over to the experts…

With the need to tackle health inequalities for people with learning disabilities, is this system one part of the solution? Do other providers undertake similar initiatives? Would providers be willing to adopt this for their clients? What impact could it have on people’s lives?

Hft’s leadership and approach is to be welcomed

The health inequalities that people with learning disabilities and/or autism experience are totally unacceptable. All parts of the system need to work better together to address the challenges. Social care providers are an important part of a large, complex picture. Every day they play a crucial part in supporting thousands of people. Hft’s leadership in this area, and its use of technology, is to be welcomed.

A key part of tackling health inequalities is the genuine involvement of people who use services in sharing insight and experience about their lives. Technology is increasingly becoming a good way to facilitate and obtain this, especially when initiatives are co-produced. Our recent report, Co-producing technology: harnessing digital solutions for social care, explored how leading providers are developing technological approaches in partnership with people who use services. This has a number of benefits, including: creating a safe digital environment for people to use technology; providing people with ownership, and voice, over their own requirements and experiences; and enabling organisations to develop the right culture and approaches to directly address health needs.

There is also a dilemma for providers since new technology requires significant investment. Whilst the Health Foundation funded Hft’s pilot, we also know that technological solutions are rarely commissioned by local authorities. Our work at VODG has also, therefore, called on commissioners to recognise the investment required to make widespread adoption of technology possible. This will give providers the confidence to invest in the long-term to harness technology and tackle health inequalities.

Rhidian Hughes, Chief Executive, Voluntary Organisations Disability Group 

Good to look at health and wellbeing together

Ever since speaking at the launch of the Government’s strategy The Health of the Nation: a Strategy for People with Learning Disabilities in 1995, I have held a keen interest in initiatives to address the health inequalities faced by people with learning disabilities. In 1996, Choice Support engaged a learning disability nurse and began including a full healthcare assessment in everyone’s support plan. Over the years, there have been many initiatives to reduce health inequalities which in the worst instances have led to unnecessary deaths, so any attempt to improve people’s health must be wholeheartedly welcomed.

Choice Support has conducted an annual health survey since 2008, which includes health checks, lifestyle, mental capacity/Best Interest decisions around health, management of long-term health conditions and health inequalities and discrimination. There were no development costs for our system other than one person’s time as it uses a free online survey tool and Excel spreadsheets. To date, we have shared the survey at no cost with three other organisations.

I will certainly make a point of learning more about Hft’s system and the potential it has to benefit the people we support. I like the idea of looking at health and wellbeing together. However, I have always favoured an approach that allows practitioners to have more face-to-face time, rather than using a remote technological tool to get information about someone’s wellbeing. Given the known high prevalence of metal health problems, combined with communication difficulties, among people with learning disabilities, my immediate concern relates to the efficacy of checking mental health, mood, stress and engagement via Lincus.

Steven Rose, Chief Executive, Choice Support 

We must all play our part to find solutions

Asking, ‘How are you?’, is a fundamental tool for delivering person-centred care.

Yet for people with a learning disability, this is a question that is sometimes not asked enough, or is asked in a way that is inaccessible to the person, potentially resulting in inadequate care.

In addition, information about how a person is feeling may not be monitored or passed on between staff involved in delivering someone’s care and support.

Technological solutions like Hft’s have a role to play in bridging the gaps which can contribute to health inequalities.

Of course, using an app will not be for everyone, but it is encouraging to hear that Hft reports that most people who took part in the pilot found the app accessible and enjoyed using it.

An additional asset is the ability to compare user data. Hft has started using this data to pinpoint areas and issues that affect a greater number of people with a learning disability; such as issues accessing dentistry and hearing checks.

The app could prove a promising tool for involving people with a learning disability in planning and reviewing services, but this finding from the pilot also serves as a reminder of the importance of involving service users. They know themselves where the gaps in services are and what is needed to make improvements in care.

Addressing the health inequalities experienced by people with a learning disability is vital, and we must all play our part to find solutions.

We’re encouraged to hear of projects like this one from Hft which help us all move closer to reaching our goal.

Sarah Coleman, Health Policy Officer, Mencap 

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