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Position statement: Health and wellbeing for people with learning disabilities or autism

People with learning disabilities or autism face a range of issues regarding their health and wellbeing. Here, we outline some of the major factors involved and offer our solutions based on factual analysis.

The stats

  • People with learning disabilities die on average 26 years earlier than the general population (Learning Disability Mortality Review, 2018)
  • The Confidential Inquiry into Premature Deaths of people with  Learning Disabilities found that 42% of the deaths they reviewed were avoidable (CIPOLD, 2013)
  • Only 23% of adults with learning disabilities are registered on the GP Learning Disability Register (IHAL, 2016)
  • People with learning disabilities are 5 times more likely to go to hospital for treatment normally given through primary care (EHRC, 2017)
  • Between 30,000-35,000 people with learning disabilities are at risk of being wrongly prescribed psychotropic drug (NHS, 2015)

What do we believe?

Everyone has the right to lead a healthy and active lifestyle. People with learning disabilities and autism should have good quality healthcare.

It is unacceptable that people with learning disabilities die so much earlier than other people.

No one with a learning disability or autism should lose out on the health care that they need. More must be done to support people to access support to be healthy.

Government must:

  • Introduce mandatory learning disability and autism training for healthcare professionals, led by people with learning disabilities and autism.
  • Make sure people know about Annual Health Checks and encourage people to take up their entitlement.

Healthcare professionals must:

  • Make reasonable adjustments. This is what the Equality Act 2010 says they must do.
  • Provide accessible information. This is what the Accessible Information Standard says they must do.
  • Work with local authorities and social care organisations to encourage people to have Annual Health Checks.
  • Create Health Action Plans and use Hospital Passports to involve people in their own healthcare.

Providers must:

  • Support people to use Hospital Passports.
  • Support people with their Health Action Plan.
  • Work with healthcare professionals to stop over-medication.
  • Train staff to understand people’s rights and to be confident about healthcare.

What do people to tell us?

“I would not feel comfortable going to see my GP alone as I feel that they do not have any interest in me and they don’t make any effort to accommodate my needs by giving me extra time or explaining things in a way I understand.” – Woman with a learning disability and autism

“My doctor didn’t talk to me even though my support worker asked him to.” – Man with a learning disability and autism

“Those that are there to support are not listened to.” – Parent of an adult with a learning disability

What are the issues?

Reasonable adjustments

People with learning disabilities and autism don’t get healthcare when they need it.

Communication about health can be difficult. This means people don’t get a diagnosis and treatment.

Some people need reasonable adjustments to help communicate. This includes extra time in appointments, using simple language and giving accessible information.

Summary Care Records let GPs know that someone has a learning disability or autism. They can list people’s likes and preferences and how to make reasonable adjustments to help them at the GP.

Hospital Passports let doctors and nurses know how someone likes to be treated and how they communicate.

Some healthcare professionals still don’t make reasonable adjustments or use things like Summary Care Records or Hospital Passports.

Training and awareness

Healthcare professionals don’t always know enough about learning disability and autism.

Some doctors don’t spot that a person is ill or in pain. They assume the person’s behaviour is part of having a learning disability or autism. This is called diagnostic overshadowing.

Diagnostic overshadowing stops people from getting a diagnosis and treatment at the right time. It can mean people get very sick or die.

Healthcare professionals need more training so they understand the needs of people with learning disabilities and autism. Training will help healthcare professionals think about each person as an individual.

Mental Capacity

The Mental Capacity Act is the law that explains how to support people who might not have capacity to make a decision.

The law is not well understood by lots of healthcare professionals. Healthcare professionals don’t always follow the law or keep records to show that they have.

Some people who don’t have capacity to make decisions about healthcare will need people to make a decision in their best interest.

A best interest decision might say that someone shouldn’t have medical treatment. This can mean people with learning disabilities don’t get the tests and screenings they need to work out if they are ill.

This isn’t always wrong. It is wrong to make decisions without following the law and keeping a record of how the decision was made.

Listening to loved ones

Families and supporters know a lot about a person. They can help healthcare professionals to understand an individual.

Lots of healthcare professionals don’t listen to families and supporters when they should. They can make decisions that don’t work for the person with a learning disability or autism.

Families and supporters should be involved in supported decision making and best interest decisions. The information and advice they give professionals should be listened to.

Over-medication

People with learning disabilities are more likely to be prescribed psychotropic drugs. Psychotropic drugs change the way the brain works.

Psychotropic drugs are given to people who show behaviour that challenges. This is known as chemical restraint.

Psychotropic drugs are meant to treat mental health conditions. Showing behaviour that challenges is not a mental health condition.

People should have their medication reviewed by the right people at the right frequency. Anyone on psychotropic drugs should have a multidisciplinary review every 6 months.

Good support is the best option to help people who show behaviour that challenges. This can help to reduce the drugs people use safely.

What are we doing about it?

Supporting good health for people with learning disabilities and autism is everyone’s responsibility. We know Dimensions has a big role to play.

Our support workers can help healthcare professionals understand the person they support and make good decisions. They can also help co-ordinate care, so someone’s health is never overlooked.

Our health and wellbeing strategy

Dimensions has launched a 3 year health and wellbeing strategy. Our strategy explains how we will help people to have good health.

The strategy is a plan for 2017 – 2020. We have set some goals for what we want to change about people’s health.

Our goals include increasing health equality and helping people to maintain their own health with good diet and keeping active.

STOMP

Dimensions supports the STOMP campaign to stop over-medicating people with learning disabilities.

Through STOMP we are making sure that the people we support have regular reviews of their medication.

We are asking healthcare professionals to follow best practice guidelines. This will make sure people don’t take medicine they don’t need.

We are training all colleagues about STOMP. They will work to make sure the people we support don’t take medication they don’t need.

#MyGPandMe

Dimensions is launching #MyGPandMe to support good healthcare. This campaign will include training for primary healthcare services. We think everyone at a GP surgery should be trained to work with people with learning disabilities and autism.

Our training is developed with people who have learning disabilities and autism. People with learning disabilities and autism will lead the training.

The training will focus on some of the most urgent health issues, including cancer screening, over-medication and constipation.