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Evidence has shown us that people with a Learning Disability:

Health inequalities are unfair and avoidable differences in health across the population and between different groups within society. 

The health inequalities faced by people with learning disabilities in the UK start early in life and often result from barriers they face in accessing timely, appropriate and effective health care.  

People with a learning disability often have worse health than people without a learning disability and are more likely to experience several additional health conditions.

Some examples of health inequalities:

  • not taking time to understand the person’s preferred method of communication.
  • not providing information in accessible formats.
  • not being able to physically use equipment for further investigation, such as MRI scans.
  • not allowing enough time at health appointments for people to fully understand what is being said.
  • not being offered the same treatment options as others in the general population.
  • dying much younger than the general population of preventable and treatable causes.
  • illnesses and ailments being attributed to the person having a learning disability. 
  • not being offered routine cancer screening.

A reasonable adjustment could be described as, asking for simple changes that make it easier for the person with a learning disability to deal with anything to do with their health.  

Healthcare professionals have a legal duty to provide reasonable adjustments for disabled people (Public Health England, 2016). This can include providing easy-read information, avoiding medical jargon or longer appointment times. 

Do not be afraid to ask for any reasonable adjustment that you think will make the health appointment easier to manage for your relative. Remember that there is a legal requirement to make reasonable adjustments to care for people with a disability under the Equality Act (2010) so you are not asking for anything that the person is not entitled to.

Have a look at this short film produced by Mencap, about asking for reasonable adjustments.

Treat me well: Asking for reasonable adjustments - YouTube

Examples of reasonable adjustments

  • at the GP surgery, being able to wait in the car and be called by the receptionist when the Doctor is ready to see the person, if they are unable to comfortably sit in the waiting room.
  • receiving communication in an easy read format.
  • meeting the nurse in advance and being show the equipment used when taking blood to prepare for a blood test.
  • receiving a telephone reminder of an appointment rather than a text message
  • an appointment at a time that is better for the person with a learning disability.
  • giving extra time in the appointment, maybe a double appointment, to allow the person sufficient time to process and understand what is being said.
  • asking to wait in the car and to receive a telephone call when it is their turn to be seen by the GP, to avoid sitting in busy waiting areas.

 

This is the term given to overlooking a physical illness because of presuming symptoms are part of the learning disability, which results in missing the opportunity to screen for other physical disease.  

Diagnostic overshadowing increases the risk of further health complications, can lead to mis diagnosis and a delay in accurate treatment. It is increasingly recognised as contributing to health inequalities experienced by the disability population. 

We know that the people we care for are prone to have the same illnesses as everyone else, but the way that they respond to or communicate their symptoms may be different and not obvious. We may therefore have to help Health and other Professionals to see the person and not just their learning disability.

Examples of Diagnostic overshadowing

  • could be where someone goes to see their GP with reoccurring stomach pain and the GP does not refer them for further investigations, saying that it isn’t necessary as it’s common for people with learning disability to have such symptoms: they are sent away with a prescription for indigestion remedies.
  • an individual with intellectual disabilities displays symptoms of depression, anxiety, or a behavioral disorder, a clinician might simply attribute these behaviors to the person's intellectual disabilities, rather than assessing the individual for a psychiatric diagnosis.
  • a health professional makes the assumption that the Behaviour of a person with learning disabilities is part of their disability without exploring other reasons for this.
  • not seeing the difference between the learning disability and the presenting illness

 

Compared with the general population, people with a learning disability are 3 to 4 times as likely to die from an avoidable and/or treatable medical cause of death. Aspiration pneumonia and complications from constipation are shown to be the two top causes of early death in people with learning disabilities.

Both aspiration pneumonia and constipation are preventable and treatable causes.  

Most of the avoidable deaths in people with a learning disability were because timely and effective treatment was not given.  

Complications caused by constipation – 

50% of people with a learning disability are known to suffer from constipation and many may be unable to tell someone when they are feeling uncomfortable so are reliant on others to notice the subtle differences that may indicate that something is wrong. The Bristol Stool chart can help with discussions about stools and constipation.

Bristol Stool chart showing different types of poo

You may want to consider using the Constipation Care Plan to help manage this. 

Aspiration pneumonia – which is where food goes into the lungs instead of going into the stomach and is often associated with having an infection or inflammation of the lungs.  

Aspiration Pneumonia occurs when the individual breathes in a foreign matter such as food, vomit, smoke, chemicals and in some cases faecal matter that has been regurgitated by someone who has chronic constipation.  

Individuals with swallowing problems are at risk of inhaling food and drink which can sit in the lungs and create infection which, if left untreated, can become life threatening. 

The known risk factors for this are having impaired understanding, a learning disability and/or dementia, having impaired swallowing (dysphagia) or when having an anesthetic. 

Barriers are things that get in the way of a person with a learning disability getting access to the same treatments as others people. 

Things like not understanding or using the person’s preferred method of communication.  

Not understanding that behaviors being displayed are the person communicating their reaction to current situations and circumstances. 

Not identified as having a learning disability 

Physical barriers such as access to buildings, transport and inaccessible equipment 

As we know, People with a learning disability who are now ageing, grew up in a time when they faced limited opportunities for social activities, education and employment, with unique needs and having faced many challenges.  

With improvements in health care generally, people are now living much longer and this is the first time that we are seeing an ageing population of people with learning disabilities. It may therefore be no surprise that health and other services are not as prepared as they could be, to help meet the needs of people with learning disabilities.  

With ageing often happening much earlier, people with Learning disabilities are prone to develop conditions such as dementia or Alzheimer’s at a much earlier age, along with other conditions such as frailty. 

Have a look at this list of Health changes and conditions to be aware of, by clicking on this link(/icon/picture)

‘Frailty in people with LD is a presentation of complex health needs, with life limiting reduction in functional ability, such as dysphagia, weight loss, frequent infections, reducing heart and lung function, pain, reducing mobility, falls and behavioral issues etc.  

People with learning disabilities experience this at a much earlier age and if care is not coordinated appropriately, patients are at risk of deterioration in physical and mental well-being.’ 

Essex Learning Disability Partnership (ELDP) 

People with a learning disability may need help to support and manage their physical health at a much younger age. 

The person you care for may not be able to tell you they are in a pain or feel unwell. 

You know your relative the best and can sometimes recognise there is a change in how your loved ones are presenting but not sure what it may mean. 

Frailty - Significant Risk Tool has been designed by the Essex Learning Disability Partnership, to help with the early identification of risk of frailty in people with a Learning Disability. 

If you are worried that your relative may be becoming frail, filling in and sharing the risk tool will help with conversations with your GP. You can also contact Essex Learning Disability Partnership for advice. 

Would you feel confident to fill this out with the person you care for? Let us know if you would like help with this.

Early warning signs are things to look out for, that might show that something is wrong or something is changing. 

Early warning signs might be something like Loss of appetite, changes to diet/poor diet; frequent/reoccurring infections; less interest in going out; sleeping more; less interest in what is happening around them.  

Click here to see some other early warning signs to be aware of.

There are many tools available which may help you to support your loved one to age well. There is more information about these tools later in the tool kit, but here are three we think you will find useful

An individual baseline is a document that contains information about an adult and how they will present to others on what is a good or normal day for them. 

This tool is used to identify any changes in mood, behaviour, appetite, or anything that could signal a change in health. It is particularly relevant if the individual has complex needs and limited communication. 

A copy of the tool can also be taken to health appointments and hospital visits and especially hospital admissions. This will help staff supporting the individual to understand their needs and identify when something changes. 

Have a look at these two examples of a baseline, one uses emojis and the other, photo symbols; would it be helpful for you to fill out one of these with your loved one? 

Baseline chart photo symbols version

Baseline chart emoji version

The Restore 2 mini works alongside the Individual Baseline we just mentioned, as it’s important to know how someone is when they are feeling well, to give a comparison to when things are changing.   

If after filling in the Restore 2, you have concerns about the observations that you’ve noted, the tool will give you a score which is known as the SBARD; this a specified process for reporting the findings to health professionals (SBARD) that they are familiar with and will result in immediate action if concerns are sufficient to warrant this.  

Have a look at the Restore 2 mini form and contact us is you want any help with understanding how this works.  

Noting those subtle changes may be particularly helpful if other people support the person you care for too. 

Essex County Council have produced a Well-being/Ill being form which is designed to capture what an average day might be for someone and then prompts to notice when things change. You may find it useful to use this tool.  

Have a look at it here:

Good day versus bad day.

Last updated: 08/05/2024
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