Research for Decision-Makers

Issue 45 –October 2012

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In this month's bulletin

This monthly bulletin provides short summaries of relevant new research and draws out key points for Adult Services in Hampshire.
It also provides information on research projects that are taking place in Hampshire. /
  • Acquired brain injury - carers
  • Dementia - diagnosis
  • Disability –employment - mental health
  • Learning disability – mental health – challenging behaviour
  • Learning disability – supported employment
  • Lesbian, Gay and Bisexual - BME
  • Online user reviews – providers
  • Reducing emergency hospital admission
  • Telecare
  • Wellbeing

New research

In Brief

The Work Capability Assessment is being used by the government to determine eligibility for Employment and Support Allowance. Around 1.5 million people are currently beingre-assessed. 84% of GPs say they have patients who have developed mental health problems because of the Work Capability Assessment, according to a poll of over 1,000 GPs undertaken by Rethink Mental Illness. The poll also shows more than one in five (21% of) GPs have patients who have had suicidal thoughts as a result of undergoing, or fear of undergoing, the Work Capability Assessment. Three quarters said that patients negatively affected by the test have subsequently needed increased support fromthem. Over 61% of GPs said assessors who carry out the Work Capability Assessment do not make enough use of GPs' knowledge of the mental health of their patients. For a press release on the poll, go to

A new report by the Runnymede Trust and Stonewall based on interviews with over 50 people showed that lesbian, gay and bisexual people from black and minority ethnic backgrounds are frequently confronted with inaccurate assumptions about their needs when accessing NHS and social care. Participants reported that the NHS frequently assumes people from black and minority ethnic backgrounds are heterosexual. Theyacknowledged that the development of culturally appropriate services is a positive step forward in addressing the diverse needs of people who access public health services. However, they also pointed out that there should not be a generic set of services for each cultural group: some lesbian, gay and bisexual people have had negative experiences and reactions from people within their own communities and do not want to seek support from them. The report, ‘One minority at a time: being black and gay’, by April Guasp and Hannah Kibirige, is available online at

An interesting article discussing the evidence on attempts to reduce emergency hospital admission amongst ‘high risk’ patients has recently been published in the British Medical Journal. It provides a counterpoint to recent papers that display an inherent assumption that reducing emergency hospital admission is a good thing. It also discusses the evidence that suggests, in contrast to anecdotal evidence, many interventions increase hospital admission rather than reduce them. The article is available online at to people who have an Athens account with SCIE. To get one free, you first need to sign up to My SCIE at . You can then apply for an Athens account online.

Acquired brain injury - carers

Acquired brain injury: The psychological and physical health effects on carers

Headway

May 2012

This report resents the findings of an online survey in which 366 carers (family and friends carers) of people who have an acquired brain injury participated. Almost a quarter came from the South East (this includes Hampshire and does not include London). The main aim of the survey was to look at the impact caring duties have on carers’ psychological, physical, financial and social wellbeing. They also wanted to find out how much support carers are receiving from statutory services and whether that support is meeting people’s needs.

Findings include:

  • 76% of carers who took part were living with the person they care for.
  • 31% of participants were caring for their husband, while 26% were caring for theirson.
  • 34% of participants reported that their relationship status had changed as adirect result of their caring duties.
  • Two thirds felt that their caring duties had placed a strain on theirrelationship.
  • 71% reported that their financial situation has been adversely affected by their caring duties.
  • 24% received carers allowance.
  • 60% felt they do not receive adequate support in their caring duties.
  • Seven% were receiving help from social workers in their caring duties.
  • Half of participants were unaware that they have a right to a carer’s assessment
  • 27% have received a carers assessment.
  • 24% were satisfied with their health. Conversely, 8% were 'very dissatisfied' with their own health.
  • Carers who took part had poorer quality of life and more stress, anxiety and depression than the general population. 18% rated their quality of life as 'poor' or 'very poor'.59% were showing signs of clinical depression with 21% in the severe or extremely severe range.

The report is available online at A summary is available at

Dementia - diagnosis

Unlocking diagnosis: the key to improving the lives of people with dementia

All-Party Parliamentary Group on Dementia

July 2012

In December 2011, the APPG on Dementia announced that it would undertake an inquiry into improving the rates of diagnosis of dementia across the UK. The inquiry received more than 1,100 pieces of evidence from people with dementia, carers, family members, health professionals and other organisations and individuals with an interest in the subject. A questionnaire was available online and in paper format which asked about experiences of diagnosis, key barriers and possible solutions. 1075 were completed. Questionnaire respondents included 51 people with dementia, 566 carers, family members or friends, 90 GPs, 68 psychiatrists or memory specialists 23 nurses, five social workers and 100 other professionals.

Findings of the questionnaire included:

  • Fewer than 15% of carers, family members or friends said they saw a GP within three months of noticing symptoms. Over a third (36%) waited more than a year before going to the GP4 and 10% never went to the GP.
  • Over half (52%) of people with dementia and over one-quarter (28%) of carers, family members or friends who responded thought having memory problems was normal as you got older. In addition, 35% of people with dementia who did not go to the GP straightaway said that this was because they did not think that there was any point.
  • Many respondents to the questionnaire suggested measures to encourage greater public awareness of dementia, including formal investment in public awareness campaigns and greater understanding of dementia in the media. They were clear that this should not just be ‘awareness’, but should also have an emphasis on ‘understanding’, with clear messages on what the symptoms of dementia are and a positive message that it is possible to live well with dementia. This would help to reduce the stigma associated with the condition.
  • An overwhelming number of responses to the questionnaire stated that GPs should have greater training in dementia. In addition, 40% of GPs who responded to the questionnaire themselves said that they had ‘some but not enough’ or ‘none beyond basic training in medical school’ when asked about training in dementia diagnosis.
  • Responses suggested that 10% of people never went to see their GP with their concerns; therefore, GPs are not the sole source of information or referral. It is also likely that this is an underestimate, as carers, family members and friends who provided this response were largely accessed through Alzheimer’s Society, and are therefore more likely to be those in touch with services.
  • The Group therefore suggests there is a need for training in detection and referral for all professionals working with people at risk of dementia. The Group suggest care home staff may be in a particular position to identify people with dementia. They argue for training for care home staff on dementia, including on the value of diagnosis and the process they should follow if they suspect someone has dementia.

The report is available online at

Learning disability – mental health – challenging behaviour

Mental health and challenging behaviour: an overview of research and practice

Yogesh Thakker, Kunle Bamidele, Afia Ali and Angela Hassiotis

Advances in Mental Health and Intellectual Disabilities, Vol 6, Issue 5

Autumn 2012

This journal article explores the evidence base for the relationship between mental health and challenging behaviour in people with learning disabilities. It looks at research on common factors that are responsible for challenging behaviour and psychiatric disorders. It also gives guidance on management of people with complex mental health and behavioural needs.

Points made include:

  • Challenging behaviour should not be considered as a problem associated with an individual but should be regarded as the product of an interaction between the individual and their environment. It may be an attempt by the individual, whether consciously or unconsciously, to communicate that their needs are not being met. Thus, the frequency of challenging behaviour can be reduced by services through the provision of flexible, proactive strategies to support the needs of people with intellectual disabilities
  • There are many causal and perpetuating factors underlying challenging behaviour. Challenging behaviour may be associated with level of intellectual disability and age; gender; specific syndromes, for example Rett syndrome and Lesch-Nyhan syndrome are both associated with self-injurious behaviour; physical illness, such as urinary incontinence, pain and visual impairment and mental illness.
  • Not all individuals with challenging behaviour will have a mental illness and similarly, mental illness may present without any challenging behaviour. Both challenging behaviour and mental illness may coexist in people with intellectual disability. In some cases, challenging behaviour may indicate the presence of mental illness, particularly in those with more severe intellectual disability.
  • Making an accurate diagnosis of mental illness in an individual presenting with challenging behaviour can be difficult for clinicians. If challenging behaviour has always been present to some degree, changes in the intensity and type of challenging behaviour require further investigation. As well as excluding physical health problems such as pain, constipation and infections, side effects from medication should be considered (e.g. behavioural disturbance secondary to anti-epileptics). In addition, environmental and psychological factors should be investigated, such as a recent bereavement, or loss of relationships.
  • Most people presenting with challenging behaviour can be managed within the community, with input from the community learning disability team.
  • Positive behavioural support is increasingly being used and combines behavioural analysis with a person-centred approach and involves replacing the problem behaviour with a functionally equivalent behaviour, as well as addressing the environmental and social factors that may be maintaining the problem behaviour. There is evidence that it is effective in reducing problem behaviours.
  • Current evidence regarding the use of antipsychotics in the treatment of challenging behaviour in adults (in the absence of a diagnosis of mental illness or autism) is ambiguous. Two trials indicated that antipsychotics havea positive benefit and one trialsuggested that antipsychotics were no better than a placebo. However these trials were not particularly well done.

The paper is available online to people with a valid Athens account at

In the same volume of the journal is also a useful paper looking at evidence and schools of thought on the causes of challenging behaviour (also only available with a valid Athens account) – at

You can access these papers if you have anAthens account with SCIE. To get one free, you first need to sign up to My SCIE at .You can then apply for an Athens account online.

Learning disability – supported employment

Cornwall People First: work in progress: an inclusive research report

Suzy Tucker, Roxanne Sutherland, Kath Alldis, Vicky Brown, David Burns & Stuart Ralphson

June 2012

This report presents findings of a research project that aimed to find the best ways for people with a learning disability to be supported into paid employment. The researchers included four people with a learning disability who had experience of using supported employment agencies (SEAs). 63 people, including clients of SEAs, family members, job coaches, managers, colleagues and employers, were interviewed in four different settings. Each SEA followed a slightly different model, although all used job coaches. The models included:

  • a college-based course;
  • Cornwall Works for Learning Disabilities- the local provider for supported employment, co-financed by Jobcentre Plus;
  • an SEA supporting people to set up their own businesses;
  • a large job coach/project search service for a wide range of people including people with learning, physical and sensory impairments, looked after children and people with mental health problems.

Findings include:

  • One of the main things that put people off seeking work was the benefits system. They thought they would be worse off if they worked, and they were worried about getting into trouble over their benefits. People said that having clear and accurate ‘better off’ calculations was helpful.
  • Job applications were often difficult, made worse by online systems. Most people had poor qualifications, so would not get to the interview stage without support. SEAs sometimes helped employers to use working interviews, work trials or creative events like ‘Dragon’s Den’ to recruit people with learning disabilities.
  • People with learning disabilities said it was good to have support at interviews.
  • Families and people with learning disabilities said it was important to have support for work at an early stage, with schools and colleges helping people to find a job. They felt that people lost hope afterwards.
  • People found it useful to have a learning group or a job club, so that they could connect with others seeking work. This was also important in one SEA where people were setting up their own businesses.
  • People with learning disabilities wanted to get a ‘foot in the door’, even if that was through voluntary work. But SEAs often said it was not good for people to have long, unpaid work experience placements.
  • Many people had very good experiences of having a job coach. It was especially good in one place, where job coaches worked through person-centred planning. However, some people said that they were confused about what a job coach could do. They sometimes felt let down by job coaches, but felt they had to be grateful. It was best when the job coach and their client had a clear written agreement to clarify roles.
  • Some people had very strong ideas about what type of work they wanted to do. It was important for job coaches in SEAs to strike a balance between job matching to find the exact job someone wanted to do, and being realistic about what work was available.
  • In three of the SEAs, job coaches worked with employers to ‘carve out’ a job that would suit the person with learning disabilities, which was seen as useful.
  • People sometimes felt under pressure to find a job, because of the job coach and SEA. That was not always helpful.
  • Ongoing support was important for some people, even after they got a job. They said it was helpful if they could contact the SEA and get help if they had a problem. One SEA managed this by having a monitoring team and others encouraged people to get Access to Work funding for ongoing support.
  • It was felt important to put more effort into sustaining a job. When someone had lost their job, they found there was no support from the SEA, leading to further personal problems for them. Career progression was important for people, but not often supported.

Recommendations include:

  • Supported employment as a whole should be more widely promoted, especially for young people learning disabilities at transition. There should be a nationally recognised pathway, so people are aware of what supported employment can offer
  • Local councils should ensure that workers with a learning disability can use free bus passes during peak times.
  • Job seekers should be seen as customers, able to choose the support that suits them. In each area, there should be a range of SEA models, with self-employment and creative support for people with more severe disabilities.
  • SEAs should provide a clear and consistent approach to guiding people through the benefits maze. In partnership with the benefits agency, a named specialist within the benefits system should be available, who has experience of working with people with learning disabilities.
  • SEAs should organise groups where job seekers can come together and offer each other peer support. Peer support for those in work should also be provided.
  • Agencies need to be available to support people through a job breakdown.
  • SEAs should share good working practice. They should work together toincrease the chance of individuals getting the support that is right for them.
  • A written agreement between job coach and client should ensure clear roles and boundaries, and guard against clients becoming over dependent.
  • Job coaches should take a person centred approach when getting to know their clients, and should believe that everyone who wants to is able to work. Their role should include:
  • Offering support throughout the process of finding and getting a job
  • Ongoing support to sustain jobs and encourage career development
  • Cold calling and promotion to raise awareness with employers
  • Creative and innovative ways to support those with high supportneeds, including the use of photographs and social stories
  • Recognising and maintaining motivation in clients
  • Liaison and communication with all stakeholders
  • Travel training for job seekers when required
  • Employers should promote lift-sharing schemes.
  • Working interviews – where an applicant with learning disabilities comes to the office and joins in with some work - should be used where possible, to give applicants a better chance to show what they can do.
  • Employers should make better use of the Access to Work scheme.

The report is available at