Year-long campaign will focus on disability and health inequalities, challenging providers to improve services
Should being in good health look different for someone who is deaf? How do you know if a person with autism is unwell if they cannot tell you? These are among the questions all social care professionals – from care managers to nurses – should be asking to tackle the significant health inequalities experienced by people with disabilities.
For the 13.3 million people in the UK who live with a disability, being as healthy as possible should be a given, but too often their medical needs are neglected or ignored. Barriers to accessing services, a lack of knowledge and skills among staff, and a failure to prevent problems are among the causes highlighted by the World Health Organisation.
Health inequalities are a significant reason why people with disabilities are four times more likely to die of preventable causes than the general population. Deaf people are twice as likely to have undiagnosed high blood pressure as hearing people, according to charity SignHealth. They are also more likely to have undiagnosed diabetes, high cholesterol and cardiovascular disease.
People with disabilities also often live shorter lives, and early deaths among people with autism and Down’s syndrome are a key concern; on average, their life expectancy is nearly 20 years less than the general population, their risk of dying from heart-related diseases is three times higher, and the odds are even greater with respiratory diseases such as pneumonia.
Nurses and care workers can also reach the wrong assumptions, especially if the person they are supporting is not able to say they are ill. A person with a learning disability may be denied pain management because they cannot tell a doctor they are in discomfort. They may not access services in the first place because the struggle to make themselves understood is too great. What’s more, these services may not be designed with their needs in mind.
To help tackle these issues, Turning Point has designed a simple online guide, with the hope that support workers use it to advocate more on behalf of the people they are supporting at GP appointments.
The NHS has stated that reducing mortality rates is a priority and has commissioned a review. Managed by researchers at the University of Bristol, the Learning Disabilities Mortality Review Programme aims to understand the circumstances behind these premature deaths and improve services for people with learning disabilities. Healthcare professionals are being encouraged to notify the programme of the deaths of any of their patients, and to be involved with a review of why they died.
As well as failing to receive medical support, people with learning disabilities can be over-medicated, too. The inappropriate use of drugs to manage mood or behaviour can create long-term side-effects including weight gain, organ failure and even premature death.
On an average day, up to 35,000 people in England with a learning disability or autism (or both) take these medications without appropriate clinical justification. This has led to a call to action by user groups, professional bodies, the Voluntary Organisations Disability Group (VODG) and NHS England to stop this practice.
Called Stomp, the campaign’s pledge has been signed by 127 organisations and seeks to improve the quality of life and health of people with learning disabilities by ensuring they receive the right amount of medication – and for the right reasons.
Progress on this issue requires simple steps, such as encouraging people with disabilities to have regular medication reviews with GPs and supporting health professionals to involve them in decisions.
With more than 80 members, including Turning Point, VODG represents organisations supporting more than one million disabled people. Its goal is to challenge providers to take action and improve services.
To achieve this, it has set up a working group to investigate what members are doing to tackle unjust differences in people’s health, to learn from each other and to promote good practice across its membership. We highlighted the issue at a conference in Birmingham this month, discussing action plans that resulted in those who attended signing pledges. The pledges will be posted on the VODG website and members will be emailed in six months to measure progress.
We do not want to reinvent what is already out there but to learn and promote what works. For example, monitoring forms are being developed by Sense to check on the health of people with congenital rubella syndrome.
Independence, choice and control are as important for people with disabilities as anyone else, but they will not have these unless we create services that are progressive, high quality and sustainable.
- Fiona Ritchie is managing director for mental health and learning disability services at Turning Point and a trustee at the Voluntary Organisations Disability Group.
Source : People with disabilities have the right to good health too : The Guardian