Training for personal assistants (PAs), families and carers supporting someone with PMLD, and a simple record to keep track of who has done what.
Start with the person
General courses are not enough on their own. Ask the person's doctor, epilepsy nurse, speech and language therapist or physiotherapist for their own written plans, and make sure everyone who supports them has read them.
Some people with PMLD are prescribed emergency medication, such as buccal or nasal midazolam, to stop a prolonged seizure. Anyone who may need to give it should be trained.
A full-day course for people caring for someone with epilepsy who has been prescribed emergency midazolam. It covers epilepsy and best-practice techniques for giving buccal and nasal midazolam. Suitable for families, care providers and employers.
Always follow the person's own plan
Training teaches the technique. The dose, when to give it and when to call 999 must come from the person's own emergency medication plan, written by their doctor or epilepsy nurse.
Mencap notes that a growing number of people with PMLD are "technology dependent", needing things like oxygen, tube feeding or suctioning. Much of this care would usually be done by nurses. Families and PAs often learn to do it at home. This training is specific to the person and usually comes from their NHS team, who should check and sign off each person as competent before they do it alone.
| Care task | Who to ask for training |
|---|---|
| PEG, gastrostomy and other tube feeding | The person's dietitian or nutrition nurse |
| Suction (mouth, nose or tracheostomy) | The person's community nursing or respiratory team |
| Ventilation, including overnight ventilation | The person's ventilation team |
| Tracheostomy care | The person's tracheostomy or community nursing team |
| Oxygen | The person's respiratory team |
| Postural care, positioning and physiotherapy | The person's physiotherapist or occupational therapist |
| Giving medication | The person's GP, pharmacist or community nurse |
Ask for it in writing
Ask the NHS team to write down who has been trained, in what, and when they need a refresher. Add it to the training record below. If nobody will train the people who support the person, that is a gap in their care, and you can complain using our complaint letter.
A charity giving advocacy and support to people on home artificial nutrition, including tube feeding, and the people who care for them.
Education, e-learning and emergency guidance on tracheostomy care, with a section for patients and families.
Videos and blogs about posture from family carers and practitioners, including NHS community occupational therapists and physiotherapists. Part of the Allied Health Professions learning site on Turas Learn.
Intensive Interaction is an approach for connecting with people who do not use speech, by following their lead and responding to their sounds, movements and expressions. Training helps PAs and families build real two-way communication.
Supports people with profound and multiple learning disabilities, complex needs and sensory processing differences to connect with others, using Intensive Interaction. Offers interactive sessions, training and consultancy.
Information, training and resources on Intensive Interaction and the Fundamentals of Communication.
A half-day certificated course for anyone working with or caring for someone with epilepsy. No previous training needed.
Live online sessions, including a 1.5-hour briefing that gives an overview of epilepsy. Epilepsy Action does not train people to give buccal midazolam or other rescue medication.
Volunteers provide CPR awareness training and help communities get access to public defibrillators across Scotland.
Many people with PMLD have a modified diet or thickened drinks. Their speech and language therapist sets the right levels. Everyone who helps them eat and drink should know those levels and how to prepare food safely.
The International Dysphagia Diet Standardisation Initiative framework describes food textures and drink thickness levels, with testing methods, handouts and videos.
The UK-based founding organisation for rebound therapy, founded in 1972. Courses include a Rebound Therapy course, Rebound Plus and a refresher workshop.
Activity-based occupational therapy in Scotland: rebound therapy for children and adults with disabilities, rebound therapy training and supervision, and specialist OT consultations.
A network for PAs working in Scotland, with information on employment, training, health and wellbeing, news and events. Members get a PA ID badge and member benefits.
Health and social care learning resources. Registering for an account is free, and some resources are only available once you sign in.
Free information and advice about getting social care, support for carers, money and your rights. You can phone or chat online.
Works to improve how self-directed support is put into practice, and helps people get help with SDS.
If you employ PAs with a Direct Payment (Option 1), you are their employer. Insurance matters most when PAs carry out clinical tasks such as tube feeding, suction or giving emergency medication.
Keep track of who has done which course and when it needs renewing. Like My file, this is saved only on this device.
| Name | Course | Done | Renew by |
|---|