Jude's Justice

What is PMLD?

PMLD stands for profound and multiple learning disabilities. This page explains what it means, what daily life can involve, and what support a person with PMLD is entitled to in Scotland.

What PMLD means

There is no single medical test for PMLD. It describes a group of people whose needs are very high. Mencap uses the definition developed by the PMLD Network, which describes a person with PMLD as someone who:

  • has more than one disability
  • has a profound learning disability
  • has great difficulty communicating
  • needs high levels of support
  • may have additional sensory or physical disabilities, complex health needs or mental health difficulties
  • may have behaviour that others find challenging

The causes vary. PMLD can result from something that happens before, during or after birth.

Health

People with PMLD get the same illnesses as everyone else, and often several complex conditions at once. Many need specialist health support that is joined up, so that one condition is not treated without thinking about the others.

Families often manage some or all of these:

  • Epilepsy, sometimes with seizures that need emergency medication
  • Eating, drinking and swallowing, which may need skilled support, a modified or blended diet, or tube feeding
  • Chest infections, often linked to swallowing difficulties and posture
  • Posture and movement, including wheelchairs, seating, sleep systems and support to change position through the day and night
  • Sight and hearing impairments
  • Personal care, including continence and access to a suitable toilet away from home

Equipment

Wheelchairs, seating and other equipment are part of a person's health care. If equipment has been assessed as needed and has not arrived, write down the date it was promised, who promised it and every time you have chased it. That record matters if you need to complain.

Communication

Most people with PMLD do not use speech. Many communicate through facial expressions, sounds, body language and behaviour. Some use a small number of symbols or signs. Some rely on the people who know them best to read their reactions.

This is why continuity of care matters so much. A support worker who has known someone for years can tell when they are in pain, frightened or happy. A stranger often cannot.

Tools that help:

  • Communication passports, which describe how the person communicates and what their signals mean.
  • Hospital passports, which give hospital staff the essential information about the person before a crisis.
  • Routine and context, since familiar events and objects help the person understand what is about to happen.

What good support looks like

  • The same trusted people, trained in the person's own health needs
  • Support that continues when the person is too ill to go out, not only when they can attend a service
  • Health, social work and education talking to each other
  • Family carers treated as experts and given support in their own right
  • Time and funding for the person to enjoy life, not only to be kept safe

Tools for good support

Some simple tools make a big difference. You can ask the person's team to use them, or start them yourself.

  • A distress record (DisDAT). The Distress and Discomfort Assessment Tool, from St Oswald's Hospice, helps families and staff write down how a person looks and sounds when content and when distressed, so changes are noticed sooner. It is free to download from St Oswald's Hospice.
  • A communication passport. A short profile, with photos or video, of how the person communicates and what their signals mean. It goes with them everywhere.
  • Intensive Interaction. Following the person's lead and responding to their sounds and movements, a little every day. See Training.
  • Switches and communication aids. Simple switches that play a recorded message, sound or song let a person take part and make choices. Ask a speech and language therapist about them. Ace Centre (0800 080 3115) and, for learners in Scotland, CALL Scotland (0131 651 6236) specialise in communication aids and technology.
  • 24-hour postural care. Good positioning day and night protects breathing, comfort and body shape. See Equipment.
  • Planning around the person. A planning meeting with the people who know them best, starting with what a good life looks like for them, not with what services are available.
  • Sensory experiences. Stories, music and activities built around the sights, sounds and textures the person enjoys.

Your rights in Scotland

This is a short guide to where to start, not legal advice.

An assessment of needs

The local council's social work service must assess a person who may need community care services. Ask for this in writing and keep a copy.

Self-directed support

Under the Social Care (Self-directed Support) (Scotland) Act 2013, a person who is eligible for support can choose how it is arranged. There are four options:

Option 1A direct payment. You arrange the support yourself, for example by employing personal assistants.
Option 2You choose the support and the council or another organisation arranges it.
Option 3The council chooses and arranges the support.
Option 4A mix: you pick Option 1, 2 or 3 for each type of support.

Support for carers

Under the Carers (Scotland) Act 2016, unpaid carers can ask for their own support plan: an adult carer support plan, or a young carer statement for carers under 18.

Decisions for adults

When a young person with PMLD turns 16, parents do not automatically keep the right to make decisions for them. Families usually need a guardianship order under the Adults with Incapacity (Scotland) Act 2000. Start the application well before the 16th birthday.

For professionals

  • Ask the family how the person communicates before you meet them, and read their communication passport.
  • Record what the person enjoys and what distresses them, not only their risks.
  • When you plan a service, ask who will support the person on the days they are too unwell to attend.
  • Put agreements in writing, with dates, and tell the family who is responsible for each action.

Sources

  • St Oswald's Hospice (DisDAT), Ace Centre and CALL Scotland websites, checked 29 September 2026
  • Mencap, Profound and multiple learning disabilities (PMLD), checked 29 September 2026
  • Social Work (Scotland) Act 1968, section 12A (assessment of needs), checked 29 September 2026
  • Social Care (Self-directed Support) (Scotland) Act 2013, section 4 (the four options), checked 29 September 2026
  • Carers (Scotland) Act 2016, section 6 (adult carer support plans) and section 12 (young carer statements), checked 29 September 2026
  • Adults with Incapacity (Scotland) Act 2000, section 1(6) ("adult" means a person aged 16 or over), checked 29 September 2026