Supporting someone with Profound and Multiple Learning Disability (PMLD) is a complex and demanding role. Every person with PMLD is unique, and so your experience as their carer will be unique too. It will vary according to the individual needs of the person you care for, and the particular support you both need to maintain a good quality of life. Caring for someone with PMLD is a long term commitment, and so it is key that you have access to the right information, training and tailored support to carry out your caring responsibilities as fully as you can, whilst still meeting your own needs long term. Here we offer a general introduction to PMLD, and share some practical advice and strategies you might consider if you are caring for someone with PMLD.
‘Profound and Multiple Learning Disability’ (PMLD) is a term that describes when someone has a severe learning disability as well as other disabilities that significantly affect their ability to communicate, do day-to-day tasks, and be independent.
PMLD is a descriptive term, not an actual diagnosis, but certain conditions that make up someone’s experience of living with PMLD can certainly be diagnosed. These conditions might include sensory impairments and sensory processing difficulties, complex health conditions like epilepsy and cerebal palsy, respiratory problems, and certain mental health issues, to name just a few. Someone with PMLD may also have speech and language issues, display behaviours that challenge others around them, and face many barriers to communicating with others.
Each person’s experience of living with PMLD will be unique, but for everyone with PMLD, they will require a high level of support from others to be able to live life as fully as possible and to express their unique strengths, needs and ambitions.
Understanding an assessment of PMLD and associated diagnoses
An assessment of Profound and Multiple Learning Disability is most likely to be given to someone when they are very young, but it can also happen later in life too. The assessment process is undertaken by medical specialists who will then also diagnose the different disabilities and conditions that make up someone’s PMLD. If the person you care for has been assessed as having PMLD it can seem overwhelming, and the more informed you are about what it means for them, and for you as their carer, the more confident you will feel.
Asking questions of their medical team, researching reputable sites online, and speaking to other carers with similar experiences can all help you feel more confident and more informed about what to expect. Because the person you care for will have multiple conditions, condition-specific organisations and information can also be good sources of information and support.
What might caring involve when supporting someone with PMLD?
If you are caring for someone with PMLD, your role will cover a wide range of practical, physical, emotional and mental support, all tailored to meet their specific individual needs. You will likely be supporting them with mobilising, personal care, eating, and communication, whilst also acting as their advocate in a variety of settings.
As a carer of someone with PMLD, you will also be making sure they are receiving the treatment and care they need across each of their multiple conditions. This can mean working closely with professional health teams, like physiotherapists or other specialist care providers, letting them know if certain conditions change and requesting regular health checks and screening. You might be administering medication, and overseeing the specialist medical support the person you care for might use, like feeding tubes, suctioning equipment or oxygen. Your support will also include encouraging the person you care for to be able to make choices and express themselves creatively, socialise and form positive relationships, and live as independently as possible.
Equipment and support to help someone with PMLD
Whilst some people with PMLD are fully mobile, many others need extra support when it comes to moving and getting around. Hoists and standing frames can support people with PMLD to move safely and comfortably. Some people may use a manual or powered wheelchair adapted with smart technology, a mobility scooter, or have access to a vehicle driven by a carer that has been adapted to fit their chair inside. Some people with PMLD may be unable to control or vary their posture efficiently and need specialised equipment like walkers or crutches to aid their mobility, support their posture and protect their body shape and muscle tone.
The communication needs of someone with PMLD will be complex, with many people with PMLD having no access to conventional means of communication, like speech, signs or symbols. This means that whilst some people with PMLD might benefit from the use of communication boards, visual aids and assistive technology, for others these traditional communication aids may not be appropriate.
It might be that the person you care for uses a range of non-verbal communication, like facial expressions and body language, and relies on you as their carer to interpret these and enable them to be involved in choices and decisions.
As a carer for someone with PMLD, you are best placed to know that despite the difficulties they may have in communicating in conventional ways, they still have lots to express. You will know how the person you care for communicates best, and can get creative, experimenting with different methods and approaches that support them to be heard.
Sharing what you know with others also means the person you care for has a greater chance to feel understood by more people, and so feel more connected to the world around them. Creating a communication passport with the person you care for and the other people who know them well can be one way to do this. This is a short, detailed document that outlines their specific needs and preferences, information about their conditions, and also includes their preferred methods of communication. A communication passport - which can also be created in video format - can help others see the person you care for as an individual beyond their PMLD, and also understand which strategies to use to communicate most effectively with them if you are not there to interpret.
Helping someone stay safe at home
Whilst someone with PMLD will always require a high level of support, it is, for some, possible for them to make choices about how and where they live, and as their carer, you can support them to do that as safely as possible. Some people with PMLD might prefer to live in their own house with their own rota of support workers, others may live in a residential care setting, others might live with parents or other family carers.
A first step to helping someone stay safe at home would be to access a Care Needs Assessment. You can request a needs assessment from your local authority on behalf of the person you care for, or you can ask your GP to do this for you. Following an assessment, a detailed care plan is drawn up to ensure that the right provision is made for them, and it can be very useful to request that one key person to be your main point of contact to support you in coordinating the different services you will likely encounter as a carer of someone with PMLD. You will also be told about the benefits the person you care for is entitled to, such as a Personal Health Budget (PHB) to pay for certain aspects of their care, like practical support from a personal assistant or special equipment to meet their needs. Certain home adaptations might also be suggested, and useful items of equipment may be provided. These could include an electric bed, handrails, or a hoist, for example.
You may also have your own ideas as to what would make things easier and improve the quality of life for the person you care for, and talking these over with your health team can help you make the most suitable choices. Receiving the correct training in moving and handling the person you care for, and guidance on how to use certain specialist equipment is also vital to ensure both of you stay safe and well. Your Occupational Therapist (OT) or medical team will be able to advise you on how to access this.
As part of making sure the person you care for is as safe and secure at home as possible, you might look at installing particular home security systems, sensors and alarms, or book a free Safe and Well check with your local Fire Service. A team will come to visit, providing you and the person you care for with actions and advice to help make their home as safe as possible. They can also help you to draw up the best fire escape plan for use in case of an emergency.
Promoting positive connections with the person you care for
Feeling understood, listened to and valued is at the heart of all positive connections, and enjoying positive relationships with others is possible for everyone living with PMLD. As someone living with so many barriers to communication, the person you care for faces more challenges than most, but as their carer you will know first-hand the depth of connection it is possible to achieve through your creativity, consistency and commitment to fostering a positive relationship with them.
In your role as a carer, you can empower your friends and family to feel more confident to relate to the person you care for and encourage those relationships to develop and strengthen. You might invite them to visit or to a social gathering where the person you care for feels comfortable and relaxed, and friends and family will see how you communicate with each other. They will learn naturally how the person you care for communicates their likes and dislikes, begin to see how they express their individual character, and all this can create positive, stronger bonds between them. This is enriching and beneficial for everyone, and importantly it will also expand your support network so you, as a carer, feel more connected too.
Someone with PMLD has the same need to connect with others and enjoy friendships and relationships as anyone else, and this includes romantic, sexual relationships. Creating an environment where you are able to be as open as possible by using clear, anatomically-correct language to talk about feelings, body parts and sex is the best place to start. This will support the person you care for to understand their bodies and their sexuality, have the ability to form healthy relationships, and to stay safe.
Not all carers feel comfortable with this, and it isn’t something you need to approach alone. There are resources and professional support out there to ensure you feel confident that this important area is covered.
Talking with the professionals in your support network is a good place to begin, and you might also visit the Assisted Loving website for more information here.
If you are looking for more suggestions on communication strategies you might try, our article on communicating with someone who is mute or non-verbal may also be a useful resource.
Promoting independence for someone with a PMLD
You will be supporting the person you care for to be as independent as possible whilst taking into account their specific conditions and needs, and this begins with involving the person you care for in making decisions for and about themselves. As a carer for someone with PMLD, you will know that the person you care for is capable of ‘supported decision making’ if they are given the opportunity. These decisions might involve the people they want to work with, the types of care that work best for them, the ways they want to express their creativity, and the places they wish to live. By valuing the particular ways they communicate their ideas and their choices, asking the right questions, and communicating those desires and choices to others in their support network who can take those desires forward, you are playing an incredibly important role in promoting the independence of the person you care for.
Support for you as a carer
If you are caring for someone, it’s necessary you recognise the impact that this intensely demanding role has on you. As a carer, you also deserve the right practical, physical and emotional support, and a Carer’s Assessment can be one way to ensure you receive that. After an assessment, a plan is drawn up and can offer assistance with respite, help around the house, and other tailored support to ensure your wellbeing is being prioritised too. Our article on respite for carers caring for someone with a learning disability may be a useful read here too.