PMLD is not a diagnosis, it’s a means of referring to a group of people who have any combination of disabilities that includes a severe learning disability. In the UK, it is estimated that there are around 1.5 million people with a learning disability, and of those, around 19,728 individuals in England having PMLDs. Many people with PMLDs have physical disabilities and/or complex health issues in addition to one or more learning disabilities and may have mental health issues or sensory impairments too. Often, people with PMLDs have alternative ways of communicating to those around them.
They may become frustrated that society does not allow for them to effectively communicate. With the right level of support and resources, people with PMLDs can integrate into their local communities and develop strong relationships, enjoy activities, and feel truly valued.
Types of PMLDs
People with PMLDs are as unique as anyone else, and care programs must be tailored to suit the individual’s needs, factoring in the type of learning disability, additional disabilities, health issues, and their desired outcomes. Some examples of conditions and syndromes that are more often connected with profound and multiple learning disabilities include:
- Rett syndrome
- Tuberous Sclerosis
- Batten’s Disease
- Autism
- Down’s Syndrome
- People with PMLDs are more likely to have conditions such as respiratory diseases, epilepsy, coronary heart disease, and osteoporosis
- People with PMLDs may also require specialist healthcare such as assisted ventilation and/or Gastrostomy, Duodenostomy or Jejunostomy feeding
This isn’t to say that someone with any of these conditions is automatically classified as having PMLDs. In order to ascertain this, a person will undergo a thorough assessment to see if they meet PMLD criteria and to ascertain what level and type of support they need to live the most independent and fulfilling life possible.
What can cause PMLDs?
Not all causes for profound learning disabilities are known, but some that are medically recognised include:
- Birth complications that cut off the flow of oxygen to a child’s brain
- Genetic complications and conditions
- Traumatic injury to the brain
- Certain illnesses during early development that affect brain development, such as meningitis
- Certain illnesses during pregnancy that affect foetal brain development
Can PMLD’s be diagnosed?
A person can be assessed at any time in their life to determine if they fit into the category of having profound and multiple learning disabilities. This can happen in early childhood or in adult life, and it is an important process because it is designed to provide that person with the right level of support in their daily life, and to ensure caregivers understand how to work with, communicate with, and support the person in their care.
The assessment process should be undertaken by a medical specialist or group of medical specialists experienced in diagnosing learning disorders and associated health conditions. This is important because every PMLD patient has a unique combination of disabilities and health conditions, as well as motor and mental capabilities, so there is no one-size-fits all treatment or support plan.
How can people with PMLD be supported?
People with profound learning disabilities will need resources and support that are tailored to their specific needs. This can include:
Learning support
Learning can continue throughout the lifetime of someone with PMLDs and will likely need to focus on early development skills. Many people benefit from creating a learning program that works with their other disabilities and health needs.
Communication support
Rather than relying primarily on verbal language, people with PMLDs can often communicate using alternative methods such as facial expressions, body language, vocal sounds, and behaviour They may also use communication devices, systems such as PECS, Makaton or sign language, or Braille. Others may prefer using repetition or context/routine. Caregivers will need to work closely with each individual to learn and support their communication and interaction needs.
Physical support
People with PMLDS may be fully mobile, but others may use wheelchairs or have difficulty with mobility, control, and posture. For these individuals, physical and occupational therapies are vital for supporting mobility and physical wellness.
Day-to-day support
People with profound and multiple learning disabilities are assessed to require 24-hour support and will often require support in most, if not all, areas of their life. Such areas could include, support with eating, washing, personal care, running errands, scheduling appointments, managing their environments and dressing. They may also benefit from support to sustain relationships including social interaction with their loved ones and peers, skills development, and fun activities.
Health support
Specialist health and medical support may be required for individuals, including medical equipment (oxygen, tube feeding, etc.) as well as prevention and management of chest infections, gastro-intestinal health issues and respiratory conditions that can be common health problems for people with PMLDs. Other conditions requiring health support may include epilepsy, coronary heart disease, depression and anxiety, diabetes, dental health issues, and swallowing/eating problems.
Mental health support
Because someone with PMLDs uses alternative communication methods, it can be challenging to assess their mental health status and provide the correct support. It is important to understand a person’s baseline behaviours in order to notice any changes that may indicate they are mentally unwell. This means that supporting mental wellness and being alert for possible mental health conditions is critical.
Behavioural support
Getting to know the behaviour, personality, and individuality of a person with PMLDs is critical to meeting their health and support needs, as they cannot always express themselves through recognised ways It’s essential that caregivers know why their patient is behaving the way they are in order to provide support. For example, are they agitated while being dressed because they are hypersensitive to touch or are they in pain? Are they happy and at peace when sitting alone watching others or feeling depressed, anxious, or isolated?
Personalised care plans and care facilities
Because of the complex care needs for individuals with PMLDs, each person requires a customised care and support plan developed by trained specialists, medical practitioners, and caregivers. PMLDs can have a significant impact on a person’s ability to live independently, combining medical issues with sensory needs, alternative communication methods, and reduced mental capacity. As a result, many people are supported in dedicated care homes.
These care homes combine all day-to-day support and care resources for people with PMLDs. Residents are encouraged and supported to create their own care plans which includes information regarding their life decisions, and how they wish to live their daily life. This ensures that people with PMLDs have the same access to quality care, support, and independence as anyone else ensuring that all staff working with the individuals have a thorough understanding of the person’s needs and how to best meet them.
Their care needs are addressed 24 hours a day, working to prevent healthcare complications as well as monitoring person’s dental and oral hygiene, fluctuations in weight, appetite, eye care and vision, mood, interactions, behaviours, and much more to provide holistic care.
Barriers to care and support for people with PMLDs
People with PMLDs are especially vulnerable members of society and despite having their rights legislated in the Human Rights Act, Mental Capacity Act, and others, they still face significant barriers to healthcare and support. This includes:
Negative attitudes
It is common for judgements to be made about the quality and meaning of the lives of people with PMLDs, which can cause lack of funding and awareness around more expensive and advanced support and technologies. It can also result in poor medical evaluation and poor medical care, and a failure to understand how to treat and support someone with PMLDs.
Communication barriers
Because of communication, developmental, and intellectual disabilities, as well as complex medical needs, it can be very challenging for an untrained or inexperienced person to understand the needs of someone with PMLDs. This can lead to poor or inadequate support, neglect, and potentially life-threatening situations if these barriers are not overcome, or the right support network engaged.
Financial barriers
Even in the UK, the intense, advanced, and constant support and care a person with PMLDs requires can be out of the financial reach of caregivers and families. While health and social care is available for people with PMLDs, it requires specialist training, expensive equipment, and extensive experience to provide the right level of support and can be difficult to obtain.
Awareness barriers
People with PMLDs need to live in a community where everyone is aware of their abilities and actively working to support them, but this is very difficult to achieve, especially as every case is unique. When people with PMLDs have to go into hospital, for example, barriers to care can be very difficult to overcome as patients and care teams will likely struggle to communicate, medical history can be challenging to obtain, and managing care in light of additional physical and health conditions can make cases very complex.
The difference between PMLDs and people with complex or high support needs
It is easy to categorise all disabled people in the same way. However, a person with multiple sclerosis, may have high support needs but these are mostly physical and will impact on their daily lives in a different way to those with PMLDs. A good example of this is Stephen Hawking, who had high support needs due to suffering from motor neuron disease. He needed 24-hour daily care, which included physical and occupational therapy, medical care, and technical disability support using a wheelchair, disability technology and communications software. However, he was also able to exhibit his extraordinary intellect as a theoretical physicist, cosmologist, and author regardless of his physical condition.
Developing specialist caregivers specialising in meeting the needs of the PMLDs community in the UK
3Trees is a dedicated provider of care for adults in the UK, training and supporting a wide network of talented and passionate health and social care workers to support vulnerable adults, including adults with profound and multiple learning disabilities. We are focussed on training our care workers and providing them with the ongoing resources and support they need to turn a passion for helping people into a rewarding and fulfilling career. To find out how we can help you become an exceptional care worker to facilitate adults live full and abundant lives, contact us today. At 3 Trees, we want to help you to support others.
