Healthcare practitioners

People with Learning / Intellectual Disabilities experience poorer health than the general population

In 2019 44% of deaths of people with LD were from preventable healthcare conditions.

During the first wave of the Coronavirus pandemic in the United Kingdom (UK) people with LD were 6 times more likely to die from the virus and young men aged 18-34 were 30 times more likely to die from the virus than the general population.

People with Learning Disability have the same rights to high quality healthcare free at the point of contact as anyone else. And yet we know that health inequalities are so vast as to reduce life expectancy by 17-20 years (not even taking in account comorbidities).

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What Can You Do?

So what can you do to ensure people with learning disability get better access to healthcare?

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Understand the need

People with learning disabilities make up between 1-3% of the general population depending on the country you take the data from. In the United Kingdom (UK) there are an estimated 1.5 million people with a registered Learning Disability based on conservative estimates.

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Understand the terminology

There are lots of terms written around Learning Disability, even the term learning disability can be misunderstood. A Learning Disability is IQ related (generally accepted level is IQ of 70 or lower) and affects learning across  all areas of a person’s life. Internationally the term used is Intellectual Disability.

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Learn More

A Learning Difficulty is not IQ related and, whilst the effects may be disabling they do not impact learning across all areas of life.  Examples of duch include Dyslexia, Attention Deficit Hyperactive Disorder (ADHD).  It should be noted that in some countries for example the United States term these conditions Learning Disability.

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Understand your legal obligations

The Equality Act 2010 is a major piece of legislation which made it illegal for people or establishments to discriminate against someone of the grounds of Sex, Age, Gender/gender reassignment, Disability, Marital Status, Sexual Orientation, Pregnancy/Maternity, Religion or Race.

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The Equality Act 2010

The act does give additional powers to providers to positively discriminate, and for the purposes of people with learning disabilities and healthcare it allows us to invoke reasonable adjustments.

Reasonable adjustments are anything you can do to support someone to engage with your session that would be deemed reasonably practicable.

Some examples of reasonable adjustments:

Allowing someone to visit prior to their appointment so they are orientated to the department and team they will meet.

Allowing people to bring a family member/carer to their appointment in spite of COVID.

Seeing someone in an environment they may be more comfortable e.g their car, a side room.

It’s important to remember that it is the law that reasonable adjustments should be made if someone falls under one of these protected characteristics.

Click here for more information.

The Mental Capacity Act 2005

The Mental Capacity Act 2005 (MCA) is a piece of law that sets out how we can support people to make their own decisions. It sets out how we can assess whether or not someone has capacity to make a particular decision.

It has 5 grounding principles:

1. You should presume that everyone you see has capacity to make decisions about their care unless it is proven otherwise.

2. Individuals should be supported to make their own decisions as far as is reasonable – this could mean giving the person information in a format they can understand.

3. People have the right to make an unwise decision

4. If someone does lack capacity – any decision that is taken should be in that individual’s best interests.

5. Any decisions made on someone’s behalf should be using the least restrictive methods to achieve the goal.

Assessing capacity:

The Act sets out the method for how we assess someone’s capacity to make a particular decision.

The Two Stage Test

This sets out a method for assessing whether or not an individual has the capacity to make a particular decision.

Before getting into this I should state before we go any further that any assessment of capacity is time and decision specific i.e. you can’t do one assessment of capacity and apply it to all areas of a person’s life. You wouldn’t believe that a person needs the same level of understanding to choose what they want for lunch and where to invest their money would you? So don’t think that a previous capacity assessment means a person does/does not have capacity.

The capacity act is there for everyone who may lack capacity at some point in their life. This includes everyone, we are all only one accident away from the capacity act being there for us. People in Comas with dementia or any other disturbance in functioning of the brain may need the act to support their decision making.

 Stage 1. Is there an impairment of or disturbance in the functioning of a person’s mind or brain?

For the purposes of Learning Disability it would be reasonable to say that yes there is, if not then the individual does not lack capacity. We all may have instances where we may lack capacity – being unconscious, under the influence of noxious substances or the effects of head trauma may be reasons for a person lacking capacity.

If so,​

​Stage 2. Is the impairment or disturbance sufficient that the person lacks the capacity to make a particular decision?​

To work through question 2 you have to look at some sub questions

Can the individual understand the information presented to them even when all reasonable adjustments have been made.

Can the individuals retain information long enough to be able to make a decision/for the decision to be relevant?

Can the individual weigh up the pros and cons of taking/not taking a particular course of action?

Can the individual communicate their decision?

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Adapt Your communication.

Could you attend an astro physics lecture delivered with no presentation, presented in just spoken word and be able to understand it thoroughly?

It’s fair to assume probably not.

In the same way, people with learning disability may require information to be broken down into easier to understand parts, or use pictures/symbols to support the point being made.

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Learn More

Healthcare settings can be an intimidating place.  We know that “White Coat Syndrome” is prevalent amongst the general population who tend not to have impairments of understanding.  

So you can appreciate that if you have a learning disability, the clinical environment can be incredibly challenging.  

Therefore people with learning disabilities may require information to be adapted in order for people to understand it

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Understand how to adapt youR clinic and approach

Structure your clinic with accessibility in mind. At point of referral send out all information in easy read format with no jargon to all patients. Make it clear you welcome people with disabilities and are committed to giving people the support they require. Make it clear you can offer orientation visits, additional time, the ability to be accompanied if needed. Train your staff in Mental Capacity Act, Safeguarding and Equality Act.

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Further Reading

Please vist our #MakatonforHCPs playlist here.

Learn to adapt exercise

 

Just because people have Learning and/or Physical Disabilities this does not mean they should not be supported to engage in physical activity and exercise.

People with Learning Disabilities engage is lower levels of physical exercise than the general population.

View our function for exercise video playlist here. 

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Structure your clinic

You can do things which will help people who have a learning disability to engage with your service.

At the first point of contact – ensure your letters state that you welcome people who may have additional needs and have knowledge of the Equality Act and valuing each interaction is important to you. Make sure you make it clear you are able to make reasonable adjustments to support everyone to engage.

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Further Reading

Use this document https://www.csp.org.uk/publications/so-your-next-patient-has-learning-disability-guide-physios-not-specialising-learning which was created by a group of therapists who specialise in working with people who have a learning disability.

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