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This paper reports the results of a review of services for adults with profound intellectual and multiple disabilities carried out as part of the implementation of Valuing People Now. Examples of good practice were identified which could be used to illustrate both what is possible and what policy obstacles have to be overcome. Families supported to make the most of the opportunities presented by the Government's ‘personalisation’ agenda were in general getting what they and their disabled family member needed and wanted. A number of specific obstacles were identified to which national and local government need to attend in order to enable more families to take up the new opportunities available.

Since 1999, one of the Special Interest Research Groups within the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has been on profound multiple disabilities (PMD). This group has stimulated a world‐wide discussion on education and support for such individuals. However, it is evident that there is some disagreement about who is included in this category. There has also been a debate about the applicability of various policy changes for people with PMD. A third topic of discussion has been the need for more research related to this target group and the related research priorities. This paper profiles and discusses these questions.

Valuing People Now (DH, 2009) recognises that some people, particularly those with complex needs, have been missing out. It has made ‘including everyone’ a priority for the next three years. With reference to Tom's story, this paper will consider the reasons why people with profound and multiple learning disabilities (PMLD) remain among the most marginalised people in society today, what has changed since Valuing People (DH, 2001) and what needs to change in the next three years of delivering Valuing People Now (DH, 2009) if we are to rise to the challenge of ‘enabling extraordinary people to live ordinary lives’ (McConkey, 1998).

Widely varying rates for the prevalence of psychiatric disorder have been reported in the previous published literature. The aims of this study were to describe the prevalence of psychiatric disorders in a random sample of adults with moderate to profound learning disabilities living in the community, and to explore the socio‐clinical factors associated with psychiatric disorders.A process of active case finding was undertaken to identify adults with learning disabilities. A random sample of 240 was taken of whom 121 were found to have moderate to profound learning disabilities at interview. Information was collected on socio‐demographics, service use, physical health, medication use, and life events. Standardised instruments were used to assess psychiatric symptoms, problem behaviour, and severity of learning disabilities. Diagnoses were generated using four diagnostic systems: clinical, DC‐LD, DCR‐10 and DSM‐IV.Higher rates of psychiatric disorder are reported than in previous published studies in the general population and in studies with people with learning disabilities living in the community. Further investigation of the effect of diagnostic system on prevalence rates, and associations of psychiatric disorder are warranted.

The purpose of this paper is to provide a commentary on “An audit of an Intensive Interaction service”.

Drawing on the literature regarding other related person-centred approaches and clinical and research experience, an argument is made that people with profound intellectual and multiple disabilities are particularly at risk when service innovation does not account for their unique needs.

Practice and service models need to specifically account for the needs of people with profound intellectual and multiple disabilities.

The commentary draws attention to the importance of implementation and seeks to draw lessons from well established, service wide approaches for people with intellectual disabilities.

The perception among carers and health professionals is that the health care system remains limited in its effectiveness and accessibility to non‐institutionalized people with a mental illness. The purpose of this paper is to determine the effect of the care recipient's main disabling condition (either physical or mental) on the carer's perceived need for assistance in their role as carer.

Based on the data collected from the Australian Survey of Disability, Ageing and Carers, the investigation involves the non‐institutionalized recipients of care with profound and severe disabilities, aged 15 years and over, residing in private dwellings and their primary informal carers.

Regression analysis reveals that carers of those with a mental disability are 2.7 times more likely to report care needs unmet compared to carers of those with a physical disability. Further analysis using interactions shows that carers who are the adult children of mentally disabled parents report a comparatively very large amount of perceived unmet need.

If equity is measured in terms of perceived need rather than finite resources a case is made that primary carers of people with a mental disability experience greater burdens in care.

Bereavement and loss are key factors in poor emotional wellbeing among people with profound and multiple learning disabilities (PMLD). However, little attention has been drawn to this group in the grief and disability literature. The purpose of this paper is to make sense of bereavement and loss in people with PMLD, with reference to theoretical contributions to the field and studies of grief reactions.

A systematic review revealed 34 relevant published works. These were analysed for relevant contributions.

Three main types of theoretical contributions have been made; traditional grief theories, cognitive approaches and attachment-based perspectives. Although a limited number of case studies exist, a range of grief reactions have been reported in people with PMLD. Traditional grief theories and cognitive approaches are somewhat limited in making sense of grief responses in this group, while attachment-based perspectives may prove useful in providing theoretical and therapeutic direction.

Further research is required to more accurately describe the nature of relationships in people with PMLD.

Major contributions to the field point to the value of facilitating engagement with the grieving process, through communication around the loss and training for staff. In addition, attachment-based perspectives are offering routes for establishing therapeutic relationships that may help to resolve behavioural difficulties.

This paper provides an overview of the perspectives within bereavement and disability, drawing together clear theoretical frameworks for future research and practice.

The diagnosis and management of cancer in people with intellectual disabilities (PWIDs) are fraught with difficulties. The purpose of this paper is to present a case study to highlight these difficulties.

The present case analysis describes the presentation of a 56-year-old man with a profound intellectual disability, who developed recurrent chest infections and died as a result of obstructive pneumonitis.

Despite a presentation over several years and numerous chest X-rays demonstrating a consistent lung abnormality, it was only on postmortem examination that a right-sided lung carcinoma was detected.

The papers have provided an update on the topic in light of recent legislations and management strategies which need to be applied to clinical practice if any improvement is to happen in the care of PWID.

The education of pupils with profound and multiple learning disabilities (PMLD) has gradually improved, due to a range of new initiatives and the introduction of the national curriculum. However, it is widely recognised that some pupils have a wide range of early specific and complex needs that are not always met. This paper describes a new early curriculum for self‐development being implemented at the Shepherd School, which is unanimously supported by therapists, parents and teachers. It is suggested that, for pupils with PMLD, the new revised framework could provide a more relevant broad and balanced curriculum, fulfilling individual needs, and ultimately lead to effective access to the national curriculum.