Profound Intellectual and Multiple Disabilities (PIMD/ PMID/ PMLD) 

Jillian Pawlyn, Senior Lecturer, Field Lead Learning Disabilities. De Montfort University @PMLDLink @JillianPawlyn  

Draft Book Chapter - 12 April 2017, amended 3 September 2025.

Terminology:

In this paper, the term Profound Intellectual and Multiple Disabilities is used. Equivalent terms are Profound and Multiple Learning Disabilities (PMLD), Profound Learning and Multiple Disabilities (PLMD).

In the United Kingdom, we usually use the term Learning Disabilities (Department of Health, 2001). Outside the UK, the term Intellectual Disabilities is generally used.  More recently the term  

Introduction

People with Profound Intellectual and Multiple Disabilities (PIMD) are, like everyone else, unique individuals.  But sometimes it is helpful to talk about groups of people who have common concerns. Children and adults with profound intellectual and multiple disabilities have more than one disability, the most significant of which is a profound level of intellectual disability PMLD network (2008); typically, they will present with an IQ (Intelligence Quotient) estimated to be under 20 (World Health Organisation (W.H.O), 1996), and will have severely limited understanding and great difficulty communicating (Bunning 2009;  PMLD network 2008; Mansell 2010). (see Box 1).

It is well established that people with profound intellectual and multiple disabilities have substantial, sustained, complicated health care needs; all the problems identified in the health care of people with learning disabilities (Mencap 2007; Michael 2008; Local Government Ombudsman and Parliamentary and Health Service Ombudsman 2009, Mansell 2010) apply to adults with profound intellectual and multiple disabilities. 

Identifying accurate numbers of people living with PIMD is highly problematic due to the lack of a standardised terminology and robust surveying approaches for this population of people; at best, numbers are estimated and predicted. 

The Department of Health (2001) estimated 210,000 people with severe and profound intellectual disabilities in England: around 65,000 children and young people, 120,000 adults of working age and 25,000 older people. They estimated an increase by, on average, 1.8% each year to 2026, and the total number would be > 22,000 people.  According to Emerson (2009), in an ‘average’ area in England with a population of 250,000, Adults with PIMD will rise from 78 in 2009 to 105 in 2026, and Young people with PIMD becoming adults in any given year will rise from 3 in 2009 to 5 in 2026. In 2010, there were an estimated 16,000 adults with profound intellectual and multiple disabilities in England (Mansell 2010). 

These numbers are significant, as services need to know who lives in their local population and their requirements in order to commission appropriate services to meet the health and care needs of people with profound intellectual and multiple disabilities and their families and carers. 

Question 1

What do we mean by the term ‘Health’, in relation to people with PIMD?

Case study - part one

Peter is 20, he has a profound level of intellectual disability, cerebral palsy and epilepsy. Peter lives in a bungalow shared with three other young people who also have profound intellectual and multiple disabilities. 

Peter had a ‘normal’ birth; his mother did not experience any complications during her pregnancy or during Peter’s delivery. Some weeks following the birth, Peter’s parents became concerned that he appeared to be a ‘floppy baby’ (NHS Choices 2015a). As he started to grow, his parents noticed that he had difficulty sitting; numerous visits to the Health Visitor clinic began to uncover further concerns. Peter was also having difficulties with swallowing; his parents often worried that he was choking while eating and drinking. They also began to worry about his communication. Peter would look at them and appear to see them, but he was not attempting to speak. At eighteen months, Peter was diagnosed with having Cerebral Palsy (NHS Choices 2017; National Institute for Health and Care Excellence (NICE) 2017), Dysphagia (NHS Choices 2015b), and idiopathic intellectual disability (W.H.O. 1996). 

Peter’s parents had a good rapport with their Health Visitor, but the shock of the diagnosis and then the volume of information about likely health difficulties he might experience and the limitations of his communication and lack of independence, left them reeling. They left the clinic in disbelief. What had they done wrong? What caused their son's disability? Why didn’t the Health Visitor do something sooner? What happens now? They were fearful, how could someone they trust give such bad news? They felt alone and worried about being able to find someone they could turn to for support.

Question 2

What are the common health conditions experienced by people who have PIMD?

Case study continued…

As the months turned into years, Peter began school. He was fortunate to be allocated a place in a school for children with similar physical and intellectual disabilities to his. Peter soon appeared to enjoy being at school, teachers described him as a ‘joyful’ child, he ‘brought a ray of sunshine’ into the class. The teaching staff began to use ‘Intensive Interaction’ (Nind 2009) to interact and support communication with Peter, with the support of the school outreach. Peter’s parents implemented this with him at home. He seemed to thrive under the attention of the classroom staff. Music was something he particularly appeared to enjoy; he soon started to vocalise and echo the sounds of the instruments around him.

Expertise in the school extended to a team of therapists: Physiotherapists with emphasis on movement and postural management, and Occupational therapists who focused on engaging activities to develop independence through practising daily living skills; Speech and Language therapists assessed his swallowing and assisted Peter to extend his range of vocal sounds. 

Due to his Dysphagia, Peter received all of his nutrition and fluids via a Percutaneous Endoscopic Gastrostomy (PEG) tube (Burton, Cox and Sandham 2009). The school nurse oversaw the care of the stoma site, the site on the abdomen where the PEG tube exits the stomach wall. The team of therapists placed particular emphasis on ensuring Peter had correct positioning while sleeping and sitting, especially during his meal times. This is of vital importance as incorrect citing of the PEG tube and/or incorrect posture during PEG feeding can result in aspiration, which can be fatal (NPSA 2010; Stayner et.al. 2012; NICE 2017).  

Like Peter, people with Profound Intellectual and Multiple Disabilities are reliant on others to support them to meet their health needs. Adults with Profound Intellectual and Multiple Disabilities have greater reliance on paid support and care staff for day-to-day interventions.

Many health and social care professionals are ill-equipped to meet the needs of people with Profound Intellectual and Multiple Disabilities. Sometimes this can mean that people with Profound Intellectual and Multiple Disabilities can be left with undiagnosed conditions, such as impacted earwax that directly affects their quality of life. Some health professionals make assumptions about the person's health and see their presenting ‘problems’ as caused by their learning disability. However, at its most serious, we know that many families and care staff report that health professionals hold negative assumptions and beliefs about the quality of life of individuals. Ultimately, this can lead to the denial of treatment as starkly illustrated by Mencap’s ‘Death by Indifference’ (Mencap) report. 

Over the years, we have witnessed a number of disturbing events and heard reports of serious neglect and negligence.

• Equal Treatment: Closing the Gap (Disability Rights Commission, 2006) highlighted failings in access to healthcare and providing appropriate treatment for people with learning disabilities.

• Death by Indifference (Mencap, 2007) described the circumstances surrounding the deaths of six people with learning disabilities while they were in the care of the NHS. 

• A life like no other (2007) found that adults with learning disabilities are particularly vulnerable to breaches of their human rights in healthcare. 

• Health Care for All (Michael, 2008), Independent inquiry into the healthcare of people with a learning disability, responding to Death by Indifference (Mencap, 2007).

• Learning from Lives and Deaths - People with a learning disability and autistic people (LeDeR) report for 2023. (LeDeR, 2025) (see Box 2).

People with PMLD are often ignored or slotted into health services that are really not designed to meet their specific needs (Mansell, 2010). Where the person is also from an ethnic minority community, they may face even greater barriers when they speak up for themselves. 

This means people with Profound Intellectual and Multiple Disabilities are often excluded from consultations about changes to services or do not benefit from personalisation or individual budgets because people supporting the person do not understand or are not aware of the choices available.

Question 3

What supports are required by people with profound intellectual multiple and disabilities and their families? 

Case study continued…

Peter continued to thrive through his teenage years; his health needs were met at home by his parents, with his mother being the main care provider. When at school, his health care needs were monitored by the Health Visitor and Paediatrician, with additional support from the School Nurse. He experienced seasonal chest infections and occasional redness and swelling of the stoma site. These episodes required a course of antibiotic treatment and additional support via the Community Nursing team, who provided wound-care to promote healing of the inflamed stoma site (Malhi and Thompson, 2014), and monitored his breathing and secretions (Bott et.al., 2009; Hull et.al., 2012). 

When Peter reached age 14, the School began to prepare his transition (NICE 2016a) for leaving school. This presented another challenge to Peter and his family; his mother faced many uncertainties. Once he left school, Peter would be at home all the time. His mother worried about the family finances; would this mean giving up her part-time job to be at home all day? What would Peter do all day? Who would support him in his day-to-day activities? Who would monitor his health once he leaves the care of the Paediatrician? Her list of questions seemed endless. 

The school nurse, working together with Peter, his family, local community learning disability nursing team and his GP (General Practitioner), developed a transition health plan (DH 2008, NICE 2016b). As the months moved into years, the plan was reviewed and refined; a social worker joined the team to explore ‘employment’ opportunities for Peter once he finished school. 

Peter reached his 18th Birthday, and his final year in school; these were a momentous achievement and a huge cause of celebration for Peter and his family. The celebrations were short-lived. Dramatically more change appeared on the horizon, due to the demands on family life following Peter's leaving school, Peter's parents divorced; the family home had to be sold, placing Peter and his mother in a vulnerable situation. A social worker, from the Emergency Duty Team, arranged for Peter to stay in a short-term break service. This emergency referral led to the need for the care manager to find Peter a suitable long-term home. Once again, Peter and his mother required significant emotional, financial and physical support during this complex life transition.

Two years on, Peter is 20; he now lives in a bungalow which he shares with his three ‘best’ friends. Their joint 21st party will be an awesome occasion!

Question 4.

What core documents assist carers to meet the needs of people who profound intellectual and multiple disabilities?

Chapter overview

The case study of Peter has identified some of the challenges faced by people with PIMD. The development of better health and social support, combined with advances in medical care, means the number of individuals with PIMD is increasing, and that people like Peter are living longer. 

Families and carers are facing greater financial, physical and emotional challenges to meet the full range of health and care needs. Progressive development is required within health and care service commissioning to accommodate the needs of people with PIMD reaching adulthood and older adulthood, requiring ever-increasing levels of complex technology to ensure that they not only survive, but do so enjoying an acceptable quality of life (Petry and Maes 2009). 

Answers

Box 1

Adults with profound intellectual and multiple disabilities: 

- have a profound intellectual disability and 

- have more than one disability and 

- have great difficulty communicating and 

- need high levels of support with most aspects of daily life and may have additional sensory or physical disabilities, complex health needs or mental health difficulties and may have behaviours that challenge

(Mansell, 2010: 3).

Box 2

Between 2021 and 2023, a total of 3,970 adults with learning disabilities had their cases reviewed through the LeDeR process following their deaths. Of these individuals, approximately one-third (33.7%) were identified as having a severe or profound learning disability, while two-thirds (63.3%) were identified as having a mild or moderate learning disability. The number of deaths recorded in each year was as follows: 2,289 in 2023, 1,530 in 2022, and 151 in 2021 (LeDeR, 2025: 50).  

Between 2021 and 2023, 26.5% of deaths of people with PMID were preventable. Whereas, among the general population, the preventable deaths were 7.6% (LeDeR, 2025: 57).

Influenza and pneumonia were the most common causes of avoidable death among people with severe or profound learning disability (89 people,  21.5% of deaths), followed by epilepsy (54 people,  13.0% of deaths), and cerebrovascular disease (30 people,  7.2% of deaths) (LeDeR, 2025: 58).

Box 3

1. Postural care (Hill and Goldsmith 2009; Public Health England (PHE) 2018): poor postural care and subsequent lack of comfort limit engagement in daily life. Failure to protect body shape leads to long-term harm, damaging movement, breathing and eating. 

2. Dysphagia (Crawford 2009): problems swallowing lead to increased incidence of ‘aspiration’, breathing fluids or foods into the lungs. Dysphagia leads to difficulties during eating and drinking and achieving optimum nutrition orally. Poorly managed or undetected Dysphagia leads to increased incidence of chest infection, resistance to infection and death. It is not uncommon for people to have a feeding tube inserted, which reduces the problems with aspiration from Dysphagia and ensures they can eat and drink safely.

3. Epilepsy (Codling and MacDonald 2009) presents a different set of challenges. Where the person has poorly controlled seizures, they may encounter difficulties participating in a wide range of activities and engagement. Availability of rescue medication in the form of Buccal Midazolam has provided an opportunity for emergency interventions to be given anytime, anywhere. However, as an ‘unlicensed’ medication, the decision to prescribe varies considerably. 

4. Continence care (Pawlyn and Budd 2009) is a further health need which has a considerable emotional, physical and financial impact on the person and their family. Being ‘clean and dry’ and having a toilet we can use when needed is something many of us take for granted. People with PIMD face many barriers in achieving managed continence, lack of comprehensive continence assessment, treatment or management plans, undiagnosed constipation (PHE 2016), lack of pads and products to manage continence and limited access to suitable toilets in public. Changing places (Promoting A More Inclusive Society (PAMIS) 2006) toilets have provided part of the solution but much more is needed. 

5. Pain and distress may present during any health change or significant life event. Both acute and chronic pain and distress have a negative impact on mood and overall well-being, preventing activity and engagement when unresolved, and these have a detrimental impact on quality of life (Carnaby 2009a; Petry and Maes 2009). 

List 1

People with an intellectual disability are four times more likely to die of preventable causes than people in the general population, and 2.5 times more likely to have health problems (Mansell 2010). People with PIMD are likely to experience additional problems with:

• access to cancer screening

• communication

• continence support 

• dental and oral hygiene and care

• dysphagia

• epilepsy

• hearing

• mental health

• nutrition and hydration

• pain/discomfort

• posture and mobility

• respiration

• vision

• dependent on technology for their health.

Unchecked, each of these health problems can lead to discomfort, pain and premature death.

List 2

Main health needs facing people with PMLD  (Pawlyn, 2009)

The main health issues reported in research publications identify the following health issues and estimate incidence as:

• Cancer screening - Men's health & Women's health -  % Unknown

• Continence – 33% to 66% 

• Dental oral – 86% estimate of LD population

• Dysphagia - 62.5% 

• Epilepsy estimated 50- 82% in population

• Hearing – 60 – 70%

• Mental Health 11% – 52% in population

• Nutrition hydration – Tube feeding % Unknown

• Pain/comfort -  78% 

• Posture/mobility –  limited mobility estimated 92.5% (cohort study)

• Respiration – 33% 

• Technology-dependent children – an estimated 6000 children in the UK

• Vision – 30% - conservative estimate of LD population.

The figures presented indicate the range for the population reported in research studies. Estimates in the PIMD population are dependent on the definition used during each study. Lack of a clearly identified definition for PIMD within each study makes it difficult to determine prevalence accurately. 

Often, people with PIMD do not have a thorough and comprehensive assessment. All clinical and health assessments should be made by appropriately qualified and experienced professionals. National guidelines map the pathway for many health issues, and it is imperative that those commissioning and delivering services apply these recommendations.

• Continence care is a further health need which has a considerable emotional, physical and financial impact on the person and their family. Being ‘clean and dry’ and having a toilet we can use when needed is something many of us take for granted. People with PIMD face many barriers in achieving managed continence, lack of comprehensive continence assessment, treatment or management plans, lack of pads and products to manage continence and limited access to suitable toilets in public. Changing places (PAMIS, 2006), toilets have provided part of the solution, but much more is needed. "Constipation can lead to serious illness and death" (PHE, 2016).

• Dysphagia: problems swallowing lead to increased incidence of ‘aspiration’, breathing fluids or foods into the lungs. Dysphagia leads to difficulties during eating and drinking and achieving optimum nutrition orally. Poorly managed or undetected Dysphagia leads to increased incidence of chest infection, resistance to infection and death. It is not uncommon for people to have a feeding tube inserted, which reduces the problems with aspiration from Dysphagia and ensures they can eat and drink safely.

• Epilepsy presents a different set of challenges. Where the person has poorly controlled seizures, they may encounter difficulties participating in a wide range of activities and engagement. The availability of rescue medication in the form of Buccal Midazolam has provided an opportunity for emergency interventions to be given anytime, anywhere. 

• Pain and distress: may present during any health change or significant life event. Both acute and chronic pain and distress have a negative impact on mood and overall well-being, preventing activity and engagement when unresolved, and these have a detrimental impact on quality of life . 

• Postural care: Poor postural care and subsequent lack of comfort limit engagement in daily life. Failure to protect body shape leads to long-term harm, damaging movement, breathing and eating. 

When left unchecked, each of these can lead to discomfort, pain and premature death. 

References

Bott J, Blumenthal S, Buxton M, et al (2009) Guidelines for the physiotherapy management of the adult, medical, spontaneously breathing patient Thorax. 64 (Issue Supplement 1): i1-i52.

Bunning, K (2009) Making Sense of Communication. In: Pawlyn, J and Carnaby, S. Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. P.p. 46 – 61.

Burton S, Cox S and Sandham S.M. (2009) Nutrition, Hydration and Weight (In: Pawlyn, J and Carnaby, S. Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. p.p. 259 – 292.

Carnaby S (2009b) Clinical assessment of people with PIMD. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p98-110. 

Carnaby S (2009a) Mental Health problems and people with PIMD. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p113-133. 

Codling M and MacDonald N (2009) Epilepsy: Implications for people with PIMD. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p134-146. 

Crawford, H (2009) Dysphagia and People with Profound Intellectual and Multiple Disabilities. In: Pawlyn, J and Carnaby, S. Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. P.p.236 – 259. 

Department of Health (DH) (2001) Valuing People. London: HMSO.

DH (2008) Transition: moving on well A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. London: DH.  Available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_083592 (accessed 04.05.17)

DH (2009) Valuing People Now. London: DH. Available at: http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_093377 (accessed 04.05.17)

Disability Distress Assessment Tool (DisDAT) (2008) http://www.disdat.co.uk/ (accessed 04.05.17)

Disability Rights Commission (DRC) (2006) Equal Treatment: Closing the Gap. Available at: http://www.leeds.ac.uk/disability-studies/archiveuk/DRC/Health%20FI%20main.pdf (accessed 04.05.17)

Emerson E (2009) Estimating future numbers of adults with profound multiple learning disabilities in England. Tizard Learning Disability Review. 14 (4) 1359-5474.

Glendinning, C., Kirk, S., Guiffrida, A. and Lawton, D. (2001), Technology-dependent children in the community: definitions, numbers and costs. Child: Care, Health and Development, 27: 321–334. 

Healthcare Commission (2007) “A Life like no other: A national audit of specialist inpatient healthcare services for people with learning difficulties in England”, 3 December 2007. 

Heaton J, Noyes J, Sloper P, Shah R. (2005) Families' experiences of caring for technology-dependent children: a temporal perspective.  Health Social Care Community. 13(5):441-450.

Hill S and Goldsmith L (2009) Mobility, Posture and Comfort. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p328-348. 

Hull J, Aniapravan R, Chan E, et al (2012) British Thoracic Society guideline for respiratory management of children with neuromuscular weakness. Thorax.67(Issue Supplement 1): i1-i40.

Joint Committee on Human Rights (2008) A Life Like Any Other? Human Rights of Adults with Learning Disabilities. Seventh Report of Session 2007–08.  Volume I.  HL Paper 40-I. HC 73-I. London: The Stationery Office Limited.

Kirk S. (2008). A profile of technology-assisted children and young people in North West England. Paediatric Nursing, 20(9), 18-20.

LeDeR Autism and Learning Disability partnership (2025) Learning from Lives and Deaths - People with a learning disability and autistic people (LeDeR) report for 2023. London: King's College.

Local Government Ombudsman and Parliamentary and Health Service Ombudsman. (2009) Six lives: the provision of public services to people with learning disabilities. Part one: overview and summary investigation reports. Parts two to seven: individual cases. London: The Stationery Office.

Malhi, H., & Thompson, R. (2014) PEG tubes: Dealing with complications. Nursing Times, 110 (45), 18-21. 

Mansell, J (2010) Raising our sights: services for adults with profound intellectual and multiple disabilities. A report by Professor Jim Mansell. Project report. London: Department of Health. 

Map of Medicine UK (n.d.) Map of Medicine. [online] Available at: http://www.mapofmedicine.com/ (accessed 04.05.17)

Mencap (2007) Death by Indifference. London: Mencap.

Michael J (2008) Health Care for All. London: DH.  

National Institute for Health and Care Excellence (NICE), (n.d.) NICE Pathways [online] Available at: https://www.nice.org.uk/About/What-we-do/Our-Programmes/About-NICE-Pathways 

NICE (2016a) Transition from children’s to adults’ services [QS140]. [online] Available at: https://www.nice.org.uk/guidance/qs140  (accessed 04.05.17)

NICE (2016b) Transition from children’s to adults’ services for young people using health or social care services [NG43]. [Online] Available at:  https://www.nice.org.uk/guidance/ng43  (accessed 04.05.17) 

NICE (2017) Cerebral palsy in under 25s: assessment and management [NG62] https://www.nice.org.uk/guidance/ng62 (accessed 04.05.17)

National Patient Safety Agency (NPSA) (2010) Early detection of complications after gastrostomy. Rapid Response Report NPSA/2010/RRR010. [Online] Available at: http://www.nrls.nhs.uk/alerts/?entryid45=73457 (accessed 04.05.17)

NHS Choices (2015a) Hypotonia [online] (updated 30/06/15) Available at: http://www.nhs.uk/conditions/hypotonia/Pages/Introduction.aspx  (accessed 04.05.17)

NHS Choices (2015b) Dysphagia [online] (updated 19/01/2015) Available at: http://www.nhs.uk/conditions/Dysphagia/Pages/definition.aspx (accessed 04.05.17)

NHS Choices (2017) Cerebral Palsy [online] (updated 15/03/17) Available at: http://www.nhs.uk/Conditions/Cerebral-palsy/Pages/Introduction.aspx (accessed 04.05.17)

Nind, M (2009) Promoting the Emotional Well-being of People with Profound and Multiple Intellectual Disabilities: A Holistic Approach through Intensive Interaction. In: Pawlyn, J and 

Carnaby, S. Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. P.p. 62 – 78.

Paediatric Pain Profile (PPP) (2003) http://www.ppprofile.org.uk/

Pawlyn, J (2009) Achieving and Maintaining Health. (In: Pawlyn, J and Carnaby, S. Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. P.p.78 – 97.

Pawlyn J and Budd S (2009) Continence. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p292-327. 

Petry K and Maes B (2009) Quality of Life: People with Profound Intellectual and multiple disabilities. In Pawlyn J and Carnaby S (Eds), Profound Intellectual and Multiple Disabilities: Nursing complex needs. p15 - 36. 

Profound and Multiple Learning Disability (PMLD) Network (2008) About profound and multiple learning disabilities. [Online] Available at:  http://www.pmldnetwork.org/PMLD%20Definition%20factsheet%20-%20standard.pdf (accessed 04.05.17)

Promoting A More Inclusive Society (PAMIS) (2006) Changing Places Toilets – Available at: http://pamis.org.uk/campaigns/changing-places-toilets (accessed 04.05.17)

Public Health England (PHE) (2016) Constipation and people with learning disabilities: guidance. Available at: https://www.gov.uk/government/publications/constipation-and-people-with-learning-disabilities (Accessed 04 May 2017)

Public Health England (2018) Postural care and people with learning disabilities: guidance. Available at: https://www.gov.uk/government/publications/postural-care-services-making-reasonable-adjustments/postural-care-and-people-with-learning-disabilities  (accessed 04 June 2018)

Regnard, C., Reynolds, J., Watson, B., Matthews, D., Gibson, L., and Clarke, C. (2007). Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). Journal of Intellectual Disability Research. 51(Pt 4): 277-92.

Spratling, R. (2015). Defining Technology Dependence in Children and Adolescents. Western Journal of Nursing Research, 37 (5), 634-651.

Stayner, J.L., Bhatnagar, A, McGinn, A.N. and Fang, J.C. (2012). Feeding Tube Placement: Errors and Complications. Nutrition in Clinical Practice. 27(6), pp. 738 – 748.

van Timmeren, E. A., Waninge, A., van Schrojenstein Lantman-de, H. M. J., van van Timmeren, E. A., Waninge, A., van Schrojenstein Lantman-de, H. M. J., van der Putten, A. A. J., & van der Schans, C. P. (2017). Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities. Research in developmental disabilities, 67, 28–33. https://doi.org/10.1016/j.ridd.2017.05.00

Wallis, C (2009). Respiratory Health of People with Profound Intellectual and Multiple Disabilities (In: Pawlyn, J., and Carnaby, S., Profound Intellectual and Multiple Disabilities: Nursing Complex Needs. Oxford. Wiley-Blackwell. P.p. 186 – 202.

World Health Organization (1996) ICD-10 guide for mental retardation. Geneva: World Health Organisation.

World Health Organization (2022) International Classification of Diseases Eleventh Revision (ICD-11). Geneva: World Health Organization.

Further reading

• Mencap PMLD pages - https://www.mencap.org.uk/advice-and-support/pmld

• NHS Midlands and East (2012) Top Tips for supporting and meeting the needs of people with Profound and Multiple Learning Disabilities (PMLD) -https://www.mencap.org.uk/sites/default/files/2016-06/NHS%20EM%20-%20PMLD.pdf 

• PMLD Link – http://www.pmldlink.org.uk/ 

• PMLD Network – http://www.pmldnetwork.org/ 

• PMLD Network forum - https://our.choiceforum.org/c/pmldnetwork

Document developed as a draft chapter for text book.