PMLD: care at home, day to day

Mencap says that all children and adults with PMLD need high levels of support from families, carers and paid supporters, including help with all aspects of personal care such as washing, dressing and eating. That is the starting point for everything on this page, and it is also why so much of the knowledge about a person with PMLD sits with the people who know them best. The NHS page on learning disabilities and Mencap's section on profound and multiple learning disabilities are good first reads.

This page is part of the disability care section, and learning disability: the family guide is the place to start if you want the wider picture first. If your son or daughter needs less hands-on help, care at home for an adult with a learning disability is closer to your situation.

A communication passport is the most useful document a new carer can be given, and Communication Passports has free templates and examples. A speech and language therapist from the community learning disability team can help write one and suggest ways of communicating that suit your relative. The Intensive Interaction Institute explains that approach, and Sense has a page on objects of reference.

The section in the passport that matters most for health is how the person shows pain or feeling unwell. A change in behaviour can be the only sign of toothache, constipation or a chest infection, and the NHS guidance on constipation in people with learning disabilities warns that symptoms can be overlooked and the behaviour put down to the learning disability. The same information belongs in a hospital passport, and the annual health check is the yearly chance to raise it with the GP.

Postural care, as the government's guidance on postural care and people with learning disabilities puts it, aims to preserve and restore body shape and muscle tone for people with movement difficulties. It usually means a personalised 24-hour programme: adaptive seating, equipment to support the person lying down, including at night, moving and handling techniques, and training for families and carers. Mencap explains that people with PMLD often sit and lie in a limited number of positions, which puts their body shape at high risk.

The same guidance lists what can follow when body shape changes, including breathing and chest problems, difficulty swallowing, constipation, hip dislocation, a curving spine, pain and pressure sores. That is why the night matters as much as the day. A sleep system is a set of supports that holds the person in a comfortable, symmetrical position lying down, and the guidance notes that changes to night-time positioning can be difficult to introduce but succeed with support and gradual change.

Ask the GP or the community learning disability team for a referral to a physiotherapist if nobody has looked at your relative's posture recently. Mencap's page on postural care and the Scottish charity PAMIS, which works only with people with PMLD and their families, both have guides written for family carers. Photographs of each position, taped inside a wardrobe door, help every carer set the supports up the same way.

1. 1

   Read the eating and drinking plan first

   Every meal, every carer

   The plan from the speech and language therapist says the food texture, the drink thickness, how to sit and how fast to go. It should be written down where everyone can see it.
2. 2

   Check the texture and the drink level

   IDDSI levels

   In the UK, textures are described with the IDDSI framework: eight levels, from 0 to 7, with drinks measured at levels 0 to 4 and foods at levels 3 to 7.
3. 3

   Sit upright and go at their pace

   One person, no rush

   The same person gives the whole meal, sitting at eye level and waiting for each swallow. The plan will say how the person should sit, and for how long they stay upright afterwards.
4. 4

   Watch for the warning signs

   During and after

   Coughing or choking, or a gurgly, wet-sounding voice while eating, and a temperature, faster breathing or a new cough in the days after. Write down what you saw and tell the GP or the speech and language therapist.
5. 5

   Keep the mouth clean

   Morning and night

   A clean mouth means a lower risk of bacteria from saliva being breathed down into the lungs, so careful teeth cleaning is part of looking after the chest.

The chest is where eating, posture and mouth care meet. NHS England's scenario on learning disability and aspiration pneumonia names posture problems and poor oral health among the risks, and says prevention involves postural support, eating techniques and supporting oral hygiene. The signs it lists include a cough, difficulty breathing, fever, a change in voice or colour, and a change in the person's usual behaviour. It also advises that people with a learning disability who are at risk should be offered a one-off pneumococcal vaccination, which is worth asking the GP about along with the yearly flu jab.

If your relative is at risk on every texture, or cannot take enough by mouth, the team may suggest a feeding tube. PEG feeding at home explains how a tube feed works day to day, and the texture levels are set out in dysphagia diets. Some people have a tube for most of their nutrition and keep small tastes of food by mouth for pleasure, if the speech and language therapist agrees it is safe.

The occupational therapist decides which hoist and slings your relative needs and whether a transfer needs one person or two, and transfers, hoists and two carers explains how that decision is made. If your relative spends most of the day in bed or needs a hoist for every move, live-in care for someone who is bedbound or hoisted covers the room, equipment and routine that arrangement needs.

For continence, the government's guidance on constipation suggests a daily stool chart to see whether a bowel routine is working, and says a physiotherapist or occupational therapist may be able to help with toilet seating that supports a better posture. Outside the house, a Changing Places toilet has a height-adjustable adult changing bench and a ceiling track hoist, and the charity's map shows where they are, which can make a day out possible.

Rescue medicine, usually buccal midazolam given inside the cheek, is prescribed with a written plan that says when to give it, how much, and when to ring 999. Epilepsy care at home covers the seizure plan and who may give rescue medicine, and delegated healthcare tasks explains how a nurse hands a task to a carer and who stays accountable afterwards. What carers are not allowed to do sets out the wider rules, including on medicines and money.

The national framework for NHS continuing healthcare says plainly that the question is not whether a learning disability is a health need, but whether the person has a primary health need. It says a decision must not rest on the diagnosis, on the fact that a need is well managed, or on who is giving the care, and that professionals with learning disability expertise should be part of the assessment, with the family fully involved. A need that is well managed because the family manages it every night is still a need. The framework itself is long, and NHS continuing healthcare walks through it for families.

Continuing healthcare is for adults. Children and young people up to 17 are assessed under a separate children and young people's continuing care framework, so a reassessment at 18 is normal and worth preparing for, and the transition at 18 sets out what else changes then. If the NHS does not fund the care, the council's needs assessment decides what it will pay towards, and a council personal budget can be taken as a direct payment to pay for support the person or family chooses. Personal assistants and direct payments explains what councils usually accept, and benefits for an adult with a learning disability covers the benefits side.

Whoever cares for your relative now is entitled to ask the council for a carer's assessment, which looks at your own needs and can lead to support, including help towards breaks. Respite for parents of a disabled adult covers the forms a break can take, from a few hours to a week. Carers UK offers advice and support to family carers.

On PrimeCarers, the family chooses each carer, interviews them first and agrees the hours and routine with them directly. For someone who relies on familiar faces, that means you can build a small team, perhaps one main carer and one or two others for evenings, nights and holidays, and keep the same people for as long as it suits everyone. Introduce each new person slowly, with shifts alongside the family before they work alone. If arranging cover between several carers is more than you can take on, the paid managed service includes help with scheduling and holiday cover. When you are ready, see carers near you and what they charge. If the bigger worry is what happens as you get older, when the parents can no longer cope looks at planning for that.