Diversity & Equality in Health and Care Open Access

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- (2015) Volume 12, Issue 1

Knowledgeshare Feature - selected reviews and updates

Review by Virou Srilangarajah
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On 19 November 2014 – the eve of the twenty-fifth anniversary of the United Nations Convention on the Rights of the Child (UNCRC) – CRAE published its annual State of Children’s Rights in England (SCRE) report. This wide-ranging investigation covers issues including civil liberties, special educational needs and disabilities. Its purpose is to examine whether enough has been done to ‘fulfil the human rights of children in England.’ The information is derived from official statistics, freedom of information requests and published research. One of the most vulnerable groups are migrant or asylum-seeking children. The SCRE report makes eleven recommendations on reforms to, and abolition of parts of, the asylum and immigration system as it relates to children. These include ensuring free legal representation for unaccompanied children, ending detention, the appointment of independent legal guardians for unaccompanied children and increasing the level of asylum support. Taken together, they are an indictment of the way children and young people are treated for the purposes of immigration control.

To read the full review of the report visit: https://www.irr.org. uk/news/the-state-of-childrens-rights-in-england/

For a copy of the CRAE report visit: https://www.crae.org. uk/media/75135/SOCR_2014_REPORT_WEB.pdf

Equality Commission publishes Guide to Establishing Gypsy and Traveller Sites

The Equality & Human Rights Commission (EHRC) has published research on how local authorities have successfully developed and maintained Gypsy and Traveller sites in Scotland. The research was commissioned in direct response to claims from some Scottish local authorities that they were unable to secure land or planning permission to build new permanent or transit sites.

For a copy: https://www.equalityhumanrights.com/ publication/developing-successful-site-provision-scotland’sgypsytraveller- communities

Centre for Nurse Improvement Current Projects: Caring for People within a Hospice Setting who have or may Develop Difficulty Communicating their Needs due to Dysphasia, Cognitive Impairment or Extreme Frailty

St Gemma’s Hospice in Leeds provides an integrated palliative care service comprising an in-patient unit with 32 beds, a day unit and community team. Patients with a life limiting illness are referred to the service for the purpose of symptom management, psychological support and/or end-of-life care. A significant number of palliative care patients have difficulty communicating their needs which may be a result of dysphasia, cognitive impairment or extreme frailty. The aim of this project is to support hospice staff to provide person-centred care and improve symptom management for these patients. A booklet will be designed to ask the patient and their family and/or carers to provide information about the patient. This could include their routines, habits, likes, dislikes, behavioural characteristics and their life story. This will help hospice staff care for them in a way that promotes agency, dignity and alleviates distress. Resources will be made available to support communication and to help staff provide appropriate occupation, relaxation and reminiscence activities that give patients meaning and validation. A core group of staff will be trained in the use of augmentative communication and a behavioural assessment tool. Patients who experience persistent pain, discomfort and/ or unresolved distress will be referred to this group to further enhance the assessment of their pain and distress and to inform management plans.

For further information about this project please contact Jane Chatterjee: janec@st-gemma.co.uk

Visit: https://www.fons.org/programmes/reportdetails.aspx? nstid=50686&page=projects&from=1

Film of the 2014 Julian Tudor Hart annual Lecture ‘Include Me Out. Exclude You In: imagining the future of primary care’


Delivered by Prof Graham Watt, Professor of General Practice at the University of Glasgow, this film focuses on the role of primary care/general practice in reducing health inequalities. Professor Watt worked as a MRC Research Registrar with Mary and Julian Tudor Hart at the Glyncorrwg Health Centre in South Wales in the 1980s, and is now heavily involved in the "GPs at the Deep End" project (www.glac.ac.uk/deepend).

Race Equality Foundation, Better Health Briefing Paper 34 Personalisation for people from black and minority ethnic groups

This briefing looks at how personalisation can increase access to healthcare for people from black and minority ethnic communities, but also considers some of the challenges that it may bring.

Key messages:

− Personalisation is a government policy aimed at giving people more choice and control over their lives. In the context of health and social care, it is about making services more tailored to people’s individual needs using different mechanisms, including cash sums to purchase support for daily living activities (variously termed personal budgets, direct payments, or self-directed support) and other ways of managing assistance on behalf of individuals.

− Personalisation potentially offers people from black and minority ethnic groups the opportunity to arrange services that fit better with their ethnic, cultural, religious values and preferences.

− Unfortunately, research about personalisation is very variable in the extent to which it reports on service users’ ethnicity. Although personalisation generally offers benefits for most service users in terms of greater choice and an increased sense of control, studies often fail to report if these experiences vary between different ethnic groups or if there are different outcomes.

− The research that does exist suggests that people from black and minority ethnic backgrounds are generally willing to try personal budgets once they have been made aware of how they work.

− The area in which we do have more information on differential uptake is in mental health. Uptake of personal budgets in mental health services appears to be low across all ethnic groups. Organisations advocating on behalf of people from black and minority ethnic groups with mental health problems argue that their negative experiences of mental health services may act as an additional disincentive towards trying personal budgets.

− Black and minority ethnic community organisations play an important role in helping people from their communities benefit from personalisation. The impact of spending cuts on the sustainability of black and minority ethnic third sector organisations needs to be monitored to ensure that people from black and minority ethnic communities are able to benefit fully from personalisation.

− There is a need for more research on the impacts that personalisation has had for black and minority ethnic people employed in the social care workforce.

Over time, the meaning of personalisation seems to have narrowed. Early arguments in favour of personalisation emphasised its benefits in terms of prevention and in the opportunities it gave for people using social care services to participate more fully in society as a whole. More recent experiences suggest that it has sometimes been operationalised in less flexible ways than those originally intended.

See briefing at: https://www.better-health.org.uk/briefings/personalisation-people-black-and-minority-ethnic-groups

Second annual Learning Disability Census shows more than half of inpatients remain in hospital, while majority not ready for discharge

The Learning Disability Census was initiated in response to events at Winterbourne View Hospital and the details of the second annual census are now published by the Health and Social Care Information Centre (HSCIC). The census considers inpatients with learning disabilities, autistic spectrum disorder and/or behaviour that challenges, giving information about their characteristics and their experiences of care in NHS and independent facilities in England.

It finds that more than half of inpatients who were included in the 2013 Learning Disability Census were still in specialist units one year later (1,830 of the 3,250 inpatients counted in 2013).

On 30 September 2014, 3,230 individuals met the criteria of the census, compared to 3, 2505 who were included in the 2013 headcount.

The most recent census provides information on why individuals were inpatients on the day of the census, showing 2,545 patients (79%) were considered not ready for discharge. The most common reason reported by providers (for 1,365 individuals/ 42% of inpatients) was a continuing need for inpatient care due to mental illness. The second most cited reason was that inpatients were receiving a continuing behavioural treatment programme (695 or 21%) and third that the individual’s current behaviour was assessed as too risky for the Ministry of Justice to agree any reduction in security level (485 or 15%).

The Learning Disability Census Report, England, 2014 also found:

− The use of antipsychotic medication has increased. On census day in 2014, 2,345 patients (73%) received antipsychotic medication either regularly or ‘as and when needed’ in the 28 days prior to the census collection, compared to 2,220 patients (68%) in 2013.

− The number of patients who experienced one or more incident (self-harm, accident, physical assault, restraint or seclusion) dropped slightly. In 2014, 1,780 patients (55%) had one or more incidents reported in the three months prior to census day, compared to 1,875 (58%) in 2013.

− The median length of stay was 547 days for the 2014 census, compared to 542 in 2013.

− The median average distance from home in 2014 was 34.4 km, compared to 34.5km in 2013

Chair of the HSCIC, Kingsley Manning said: ῾This report provides insights which are intended to help inform improvements in the provision of care for people with learning disabilities and will be of interest to mental health professionals as well as patients, their families and representative organisations’.

Read the full report here: https://www.hscic.gov.uk/pubs/ldcensus14