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Breaking down barriers
Healthcare for people with learning disabilities

People with learning disabilities experience poorer health and die younger than people in the general population. Rhidian Hughes explores the need for closer collaboration with health and the role of the updated Health Charter in breaking down barriers to good healthcare.

The health of people with learning disabilities is affected by problems accessing healthcare, or by issues such as poor housing and unemployment.

A 2013 Confidential Inquiry into Premature Deaths of People with Learning Disabilities showed that, on average, men with learning disabilities die 13 years earlier than the rest of the population and women die 20 years earlier. Added to that, in early September, NHS England data revealed that 92% of health organisations need to improve how they treat people with learning disabilities.

However, these inequalities are preventable and the health sector is developing work on this issue. Take, for example, the 2015 launch of NHS England’s first National Learning Disability Mortality Review Programme to review – and ultimately reduce – the premature deaths of people with learning disabilities. Then, there is its work to improve take-up of routine health checks.

However, alongside health, there is also a major role for social care providers to help people access good healthcare and lead a healthy lifestyle.

A recent Voluntary Organisations Disability Group (VODG) debate, for example, reinforced the need for closer collaboration between health and voluntary sector care organisations in supporting people with learning disabilities.

As part of the work in this area, VODG and the National Development Team for Inclusion (NDTi) have published the second edition of detailed guidance for social care providers on how to use a sector-wide Health Charter.

The Health Charter

The Health Charter itself was originally co-produced in 2012 with providers, commissioners, self-advocates, carers and health staff. It is designed to be a practical resource to help improve the wellbeing of people with learning disabilities. Organisations sign-up to the Charter and outline what they will do to boost people’s health; there is a self-assessment framework and guidance to build practice upon.

The requirements of the Care Act, combined with the compelling evidence of health inequalities, mean that providers – and commissioners – must prioritise the individual health and wellbeing needs of people with learning disabilities. This makes the Health Charter, funded through a voluntary sector strategic partner programme between VODG and the National Care Forum, backed by the Department of Health, NHS England and Public Health England, more relevant than ever for social care professionals.

More than 100 adult social care employers have signed up to the guidance, which covers issues such as:

  • How to ensure all staff understand and apply the principles of mental capacity laws.
  • How to listen to, respect and involve family carers.

The resource includes practical steps on how to provide staff training on health and how to promote access to screening tests.

Those already on board say the approach offers a clear commitment to addressing health inequalities, and sends an important message to commissioners. The Charter has also been used to help with regulatory compliance, for example, organisations that have embedded it into their strategies find that it drives improvements in services.

For Michaela Hopps, Tees Esk Wear Valley NHS Foundation Trust Team Lead, Specialist Health Team, the benefits are clear, ‘The Care Act firmly places the emphasis on wellbeing, and care providers have a legal duty to anticipate health needs and act accordingly, to avoid delays in care and treatment. The Health Charter is an invaluable tool for us to identify gaps in service through self-assessment and determine priorities for care delivery.’

Implementing the Health Charter

Durham County Council, commissioning in partnership with Tees Esk and Wear Valley NHS Trust Learning Disability Health Facilitation Team, hosted an event to promote the Charter. The aim was to raise awareness about it and encourage providers to sign up. The focus was on ‘we’re all in it together’, underlining the responsibility that both commissioners and providers have in playing a vital role in improving health outcomes for people with learning disabilities locally. The event reinforced the importance of an integrated approach and co-productive partnerships.

The event included talks from guest speakers and a range of market stalls from health and social care agencies, as well as the Care Quality Commission. Such agencies provided information and practical resources to support organisations to implement the Charter. Providers also received a resource pack with additional information about the Charter, as well as all the presentations and contacts.

By doing this, Durham County Council has delivered a clear message calling for action. It is asking providers to familiarise themselves with the Charter, sign-up and identify three key priorities. This call to action has been followed up with training and awareness-raising, as well as signposting to specialist support. Most providers of supported living and residential care in County Durham, alongside some day care providers, are now signed up to the Charter.

Its implementation has also enabled commissioners to identify gaps in health services and prioritise resources. It has helped target those providers who most require support, particularly organisations supporting people with complex health needs.

Social care charity, Vibrance was a member of the focus group that originally supported the development of the Charter. Vibrance staff are trained to challenge barriers to healthcare, so the introduction of the Charter underlined the importance of supporting people to access mainstream healthcare.

Jean Jay, Director of Development said, ‘Vibrance believes the introduction of the Health Charter offers the opportunity to underpin practice that is already expected from our own staff, providing a tool and reference point for staff to use when speaking to healthcare partners. We have been able to present our experiences to local authority partnership boards, giving the opportunity to raise the profile of the Health Charter for wider impact.’

Vibrance held a series of presentations for managers and staff, sharing research and data about the inequalities experienced by people with learning disabilities. Staff highlighted the importance of the annual health check, and the need to monitor the take up of annual health checks across all services.

As well as using case studies to stress how to use existing safeguarding processes to challenge inequalities, Vibrance circulated accessible information on health issues and contact details for different liaison nurses at acute hospitals and in community teams.

Crucially, the organisation amended the annual audit for each service to include a check on how mental capacity is assessed, encouraging staff to see whether best-interest decision-making processes were used.

Impact of the Health Charter

This type of work impacted on the life of Margaret, who lives in shared, supported accommodation. Margaret has severe epilepsy and a history of chest infections. Although she has very complex physical and learning disabilities, and very little verbal communication, she clearly expresses her mood, likes, dislikes and wishes. Margaret has had many hospital admissions, and these have been of varying quality.

On one occasion, a Vibrance member of staff went to visit and noticed that some of Margaret’s treatments for her chest infection had been stopped. She found that there was a do-not-resuscitate order on her profile.

The doctor in charge of Margaret’s care informed her that the team did not feel that Margaret’s quality of life was good enough and, therefore, they did not think it was in her best interests to be treated. However, there had been no assessment or record of Margaret’s mental capacity, no multi-disciplinary best interests meeting, and – of greater concern – no discussion with the family.

Vibrance arranged for a meeting with the ward staff and Margaret’s family the next day, but unfortunately none of the clinical team attended. Vibrance spoke with the community learning disability team, who put them in touch with the local safeguarding adults team.

The safeguarding team then took control of the situation, involving Margaret and her family at every stage to challenge the hospital’s processes. The do-not-resuscitate order was removed, Margaret’s treatment resumed, her health improved and she was able to return home. Her family made a formal complaint to the hospital, who have since said they have reviewed their processes.

Improving good practice

It is encouraging that some good practice exists in the health sector to specifically support the treatment of people with learning disabilities, but Margaret’s experience proves that this is currently the exception, not the rule. If we are to speed-up progress on reducing health inequalities of people who need support, many more must adopt a far more proactive approach in this area.

The second edition of the Health Charter in Practice is available to download at

Professor Rhidian Hughes is Chief Executive of Voluntary Organisations Disability Group. Email: Twitter: @RhidianHughes

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