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Government advisors raise concerns about workforce standards and funding cuts in HIV services
Social care is becoming increasingly important for people with HIV, but there are concerns about workforce standards and the future funding of services, government advisers said yesterday.
In a report, the Independent Advisory Group on Sexual Health and HIV said the greater life expectancy of people with HIV meant 15% were now aged over 50, a proportion that would continue to increase.
It said this meant services would have to contend with new challenges for the client group, such as pensions, the impact of HIV treatment on medication associated with ageing and the long-term care needs of HIV positive people.
'Considerable workforce gaps'
But the group warned there were "considerable gaps in knowledge about HIV" among social care and NHS staff.
It highlighted the government's failure to meet its pledge to introduce standards for delivering social care for people with HIV, which was included in its 2001 national strategy on sexual health and HIV.
'DH must retain Aids Support Grant'
The report also raised concerns about the "recent closure of HIV-specific services in some local authorities" and said it was vital that the Department of Health retains the ring-fenced Aids Support Grant (ASG).
The grant, which is designed to fund social care services for people with HIV/Aids, was worth £21.8m in 2009-10, and the DH has promised to distribute a similar sum in 2010-11.
Cuts warning
However, the grant's future beyond 2011 is uncertain, and a survey published by the National Aids Trust in August found a third of councils would cut services if the ring fence was removed.
In its report, the expert group said: "The ASG has been an important catalyst in the development of services in local authorities and, as clinical experience illustrates, its continuation, indeed the monitoring of its use, is an important part of the package of care that is needed now and in the future."
Related articles
National Aids Trust issues warning over HIV services
More information
The Independent Advisory Group on Sexual Health and HI
http://www.communitycare.co.uk/Articles/2009/11/25/113245/experts-social...
The Minister of State, Department of Health (Phil Hope): The Department has today published the consultation document—“Personal Care at Home: a consultation on proposals for regulations and guidance”.
The Personal Care at Home Bill, published today, contains new proposals costing £670 million, which are the Government’s first step towards setting up a new National Care Service—a simple, fair and affordable care system for everyone.
Subject to parliamentary approval, from next October, older people and younger disabled people will be better helped to live independently for longer in their own homes—something they tell us they really want.
The Bill guarantees free personal care for the 280,000 people—including those with serious dementia or Parkinson’s disease—with the highest needs. Some of those already get free care—this Bill will protect their savings from future charges. Others will get free care for the first time. We will also help around 130,000 people who need home care for the first time to regain their independence.
This intensive help or “re-ablement” will help people to regain their independence and prevent ill health. This means people will maintain their dignity and rebuild their confidence so that they can live at home for longer. Helping people to stay in their own homes could involve adapting their homes.
New equipment installed in people’s homes to help them stay there could include electronic pill dispensers or movement activated alarms using the voice of a grandchild to remind an elderly person to close the door, for example. Helping people to stay in their own homes and adjust their living conditions so they can stay safely, puts prevention at the heart of the system.
The consultation covers three main areas:
what should be contained in the regulations made under the Bill;
what should be contained in the guidance accompanying the regulations; and
suggests three ways of allocating funding to councils.
The consultation document has been placed in the Library and copies are available for hon. Members from the Vote Office.
http://www.publications.parliament.uk/pa/cm/cmtoday/cmwms/archive/091125.htm#hddr_10
Treatment for HIV may be one of the best future forms of prevention of the disease, the United Nations agency UNAids said on Tuesday, as it signalled a continued global rise in the number of people infected to 33.4m last year.
Widespread treatment with HIV medicines could help cut the risk of transmission across entire communities as well as between individuals, UNAids said, citing a series of recent studies.
The findings came in the agency’s annual report on Aids, which responded to growing pressures on financial support by arguing that international efforts had already resulted in significant improvements in tackling the epidemic, and pledging fresh efforts to use future funds for prevention more effectively.
Michel Sidibe, head of UNAids, which was criticised in a recent evaluation, said: “We need to be more cost effective and invest in areas of prevention where we can get the maximum return.”
He argued that the countries of eastern Europe and central Asia in particular needed to place more support into prevention programmes for drug users; those in Africa to people aged over 25; and in China to homosexual men.
The report said the annual rate of new HIV infections had declined by 30 per cent since a peak of 3.5m in 1996. But growing success with treatment – now reaching an estimated 43 per cent of those who need it – means the total number still living with HIV continues to rise.
It cited one analysis showing transmission rates were 10 times lower among those treated with anti-retroviral therapy than those who were not, while a mathematical model suggested that improved access to testing, counselling and treatment could “significantly reduce infection rates”.
However, the agency cautioned that such conclusions remained open to debate, with HIV incidence stable or rising in North America and western and central Europe where treatment has long been widespread, and questions over the feasibility of further expansion in developing countries.
A study by Canada’s British Columbia Centre for Excellence in HIV/Aids argued that the increase in drug-resistant virus by those being treated was relatively modest compared with the benefits from reduced HIV incidence and the cost of treatment.
Similar findings recently released on reduced infection rates among drug users on treatment in Canada has sparked the launch of a series of studies to examine the issue in Washington, DC and South Africa.
In recent debate in the Lancet, the medical journal, officials from Ethiopia’s National HIV/Aids Prevention and Control Office argued that widespread testing and treatment consumed enormous resources in poorer countries and they concluded it was better to concentrate on those most at risk of infection, including those with tuberculosis and pregnant women.
http://www.ft.com/cms/s/0/db0a8e42-d90d-11de-b2d5-00144feabdc0.html
The establishment of the Independent Advisory Group on Sexual Health and HIV was announced by the Public Health Minister on 6th March 2003. The group, which provides a wide range of views from health professionals involved in all aspects of sexual health, will monitor progress and advise the government on implementation of the Sexual Health and HIV Strategy. The commitment to appoint this advisory group was included in the government's Sexual Health and HIV Strategy Implementation Action Plan pubished in 2002.
Select a section
Membership of the Independent Advisory Group on Sexual Health and HIV
http://www.dh.gov.uk/en/Publichealth/Healthimprovement/Sexualhealth/Sexu...
The Sexual Health and HIV Strategy was published for consultation on 27 July 2001. The Strategy indicates our long-term commitment to modernise and improve sexual health services.
Key documents
- Moving forward: progress and priorities - working together for high quality sexual health. Government response to the Independent Advisory Group's review of the Sexual Health and HIV Strategy
- Download Progress and priorities Review of the National Strategy for Sexual Health and HIV (PDF, 627K)
- One-Stop Shops - Evaluation Report
- Better prevention, better services, better sexual health - The national strategy for sexual health and HIV
- The national strategy for sexual health and HIV implementation action plan
- Recommended quality standards for sexual health training
- Recommended standards for NHS HIV services
- Recommended standards for sexual health services
- Tackling HIV stigma and discrimination - Department of Health implementation plan
- HIV related stigma and discrimination: Action plan
- Competencies for providing more specialised STI services within primary care - Assessment Toolit
- Effective commissioning of sexual health and HIV services: a sexual health and HIV commissioning toolkit for Primary Care Trusts and local authorities
- Sexual health services set to improve with publication of new recommended standards
- Teenage Parents Next Steps: Guidance for Local Authorities and Primary Care Trusts (opens new window)
http://www.dh.gov.uk/en/Publichealth/Healthimprovement/Sexualhealth/Sexu...
Phil Hope, Minister of State at the Department of Health, made a written ministerial statement in the Commons about his department's new consultation document: Personal Care at Home: a consultation on proposals for regulations and guidance.
- Commons Hansard: Statement on personal care at home consultation
- Department of Health: Consultation: personal care at home
- About Parliament: Written ministerial statements
The Personal Care at Home Bill, also published yesterday, guarantees free personal care for the 280,000 people - including those with serious dementia or Parkinson's disease - with the highest needs. Help will also be available for another 130,000 people who need home care.
The consultation covers three main areas:
- what should be contained in the regulations made under the Bill
- what should be contained in the guidance accompanying the regulations
- suggests three ways of allocating funding to councils
http://news.parliament.uk/2009/11/personal-care-at-home-consultation-pub...
The Health Committee continues its inquiry into social care, taking evidence from a number of voluntary organisations involved in caring for the disabled, elderly and mentally ill. Watch live from 10am.
The witnesses are:
10am
- Age Concern/Help the Aged (now one charity)
- Counsel and Care
- Alzheimer's Society
11.15am
- Mencap
- Mind
- Multiple Sclerosis Society
- Carers UK
The Committee decided to inquire into the future of social care services following the publication earlier this year of the Government's Green Paper, Shaping the Future of Care Together. The inquiry is looking at options for:
- future funding of long-term residential and domiciliary care for older people and people with physical or learning disabilities
- personalisation of social care services
- more effective, consistent and user-friendly social care services
http://news.parliament.uk/2009/11/health-committees-social-care-inquiry-...
More people than ever before are living with HIV in the UK but more than a quarter do not know they have it, figures show.
The number of estimated cases rose by 8% between 2007 and 2008, says the Health Protection Agency.
But it is thought 22,000 of the 83,000 people with HIV do not know they are infected.
The Terrence Higgins Trust said the high levels of undiagnosed HIV were "completely unacceptable".
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 HIV is a serious infection but if diagnosed early, there are very good treatment options  Dr Valerie Delpech
Health Protection Agency |
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In its annual HIV report, the HPA said they expected the number of people living with the infection to continue to rise as people live longer on effective therapy.
There has also been an increase in testing with 100,000 more tests done at sexual health clinics in 2008 than the previous year.
Late diagnosis is also a problem with 32% of adults in 2008 diagnosed past the point at which treatment should already have begun.
Guidelines from the British HIV Association introduced last year, suggest even stronger targets, recommending patients are considered for treatment when their CD4 immune cell count reaches less than 350 per mm3 rather than waiting until it falls further to less than 200 per mm3.
Under these rules, more than half of new cases last year would have been diagnosed late.
In 2008, 7,300 people were diagnosed with HIV and gay and bisexual men are still one of the highest risk groups for infection, although new infections in this group has fallen from the previous year.
The figures also show that 58% of new diagnoses were among heterosexuals, two-thirds of whom were Black Africans who are likely to have acquired the infection abroad.
But the proportion all new heterosexual diagnoses acquired in the UK is steadily rising
Testing
In 43 local authorities in England with higher than average HIV rates, health professionals should routinely offer testing to all men and women aged 15 to 59 years who are registering in general practice or admitted for medical care.
Dr Valerie Delpech, an expert in HIV from the Health Protection Agency said: "HIV is a serious infection but if diagnosed early, there are very good treatment options.
"Of concern is that over 22,000 people remain unaware of their infection in the UK and cannot therefore benefit from effective treatment.
"We need to continually reinforce the safe sex message - using a condom with all new or casual sexual partners is the surest way to ensure you do not become infected with a serious sexually transmitted infection such as HIV."
Sir Nick Partridge, chief executive of the Terrence Higgins Trust said: "The level of undiagnosed HIV in the country is completely unacceptable.
"With early diagnosis and effective treatment, most people with HIV can live to old age.
"If left undiagnosed, they will die earlier, be significantly more ill and more likely to infect others."
He called for more testing in more settings with the introduction of a national targeted screening programme to halve undiagnosed HIV in the UK by 2014.
Deborah Jack, chief executive, at the National AIDS Trust said the UK had not succeeded in turning the tide on HIV.
"Instead we continue to see high numbers of gay men being diagnosed and a growing number of heterosexuals infected within the UK.
"Preventing just one HIV infection could save over a quarter of a million pounds, yet over the past ten years HIV has been politically sidelined in the UK and spending on prevention at a local level has been cut."
http://news.bbc.co.uk/1/hi/health/8382787.stm
Scotland may no longer be able to afford free personal care for all its elderly population, the country's top social worker has claimed.
Harriet Dempster, the president of the Association of Directors of Social Work, said spending cuts meant the policy may have to become means-tested.
The latest figures showed free personal care costs the taxpayer more than £350m a year.
The Scottish government insisted it was still committed to the policy.
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But Ms Dempster said public spending was facing cuts at the same time as the elderly population was rising.
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We need to take a position where we recognise that people are in different positions in society about their ability to pay Harriet Dempster
Association of Directors of Social Work |
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She suggested it was time to make sure the most vulnerable were supported, perhaps by recognising that some elderly people could afford to pay for the service.
She told BBC
Radio's Good Morning Scotland programme: "The most important thing is to provide support to our vulnerable and elderly.
"When we've got short resources, we want to ensure that the most vulnerable people who are not in a position to make a contribution get the services.
Rising costs
"It's really questioning whether the policy in the medium and longer term is viable and I'm asking that we have a discussion and debate about that now."
She added: "I think we need to look at all the needs of our elderly and we need to take a position where we recognise that people are in different positions in society about their ability to pay."
The policy is currently used by 50,000 vulnerable people, and costs rose by 11% to £358m last year.
Her view is likely to be seen as important because it is directors of social work who have to administer the policy.
The Scottish government said it was working with councils and health boards to see how they could provide services for the elderly in years to come.
http://news.bbc.co.uk/1/hi/scotland/8381740.stm
The Mayor of London has a statutory duty under the Greater London Authority Act ( GLA) 2007 to prepare and publish a health inequalities strategy. This Act requires that the strategy identifies health inequalities, priorities for reducing them and the role to be played by key partners in its implementation.
The draft, 'London Health Inequalities Strategy was published for public consultation on 24 September 2009 by the Mayor, Boris Johnson. This public consultation builds on a draft strategy published by his predecessor previous Mayor ('Living Well in London'), which was issued to statutory consultees only. The consultation closes on 10 January 2010. The final strategy will be published in 2010.
related documents
London Health Inequalities Strategy - draft briefing (PDF, 119.36Kb)
http://www.londoncouncils.gov.uk/HealthAndAdultServices/briefings/health...
The government's Personal Care at Home Bill could damage the capital's already over-stretched social care services, London Councils warned today.
The Bill will make councils responsible for providing free home care to older and disabled people considered to have 'critical' needs and also require significant help with four or more 'activities of daily living', such as dressing or getting out of bed.
The government estimates that around 450,000 people will be eligible for these services nationally. It will make £420m funding available in the first full year the Bill is introduced but also expects local authorities to generate another £250m in efficiency savings to provide the scheme.
Adult social services departments have already been making efficiency savings to ensure they can maintain a high standard of service despite the current economic climate. But they are now being told to use these savings to help fund the government's new initiative.
London Councils fears this will further strain social services budgets in London, which have been hit by a series of below-inflation finance settlements and a huge loss of funding thanks to changes to the adult personal social services funding formula.
With social care services set to face even greater pressure due to the increasingly ageing population this new burden could push them closer to breaking point.
London Councils is also concerned that the new measure could cause tensions between councils and families when deciding the best care needed for a relative.
Families will likely resist a local authority's suggestion that their relative's needs would be better provided in a care home when they can receive care, although limited, at home for free.
London Councils' Executive Member for Health and Adult Services Councillor Mike Freer said:
"It is perverse that the Department for Health is ordering local authorities to generate yet more efficiency savings to pay for central government initiatives. It's their scheme - they should fund it.
"This is an enormously emotive issue and we have deep concerns that this will cause arguments between families and local authorities in deciding the most appropriate level of care needed by a relative. This could cause major problems at the most delicate of times.
"Planning and paying for the care of the most vulnerable members of society is one of the most pressing issues facing local authorities today. London's older and disabled people deserve the very best care we can provide, but heaping new burdens on local authorities like this is lunacy."
Notes to editors
One London borough has indicated that providing adult social services at the current level would require an additional £43 million over the next ten years.
While it is already making efficiency savings (£1.6m for 2008/09, £2m for 2009/10), it is clear that this will not make up the whole of the forecasted shortfall.
At present two thirds of London's local authorities are on the grant 'floor', which means they receive the bare minimum (below inflation) increase in central government funding each year.
A change in 2006 to the funding formula for adult personal social services (PSS) saw London's social services lose out on almost £900 million of undamped formula grant for the funding period 2008-11. See Floors not Flaws for more information
Local government is the most efficient part of the public sector; for the financial year 2008/09, London's local authorities delivered over £376 million of efficiency savings, exceeding the target set for them by central government by almost £100 million.
For details of the Bill, which was released last week, please see the parliament website
For details of the consultation on regulations and guidance, please see the Deparment for Health website
http://www.londoncouncils.gov.uk/media/current/pressdetail.htm?pk=846&sh...
Eight local authorities in England have been told they must urgently improve their social care services for adults.
The Care Quality Commission found overall improvement, with 95% of councils in the top two categories.
But its annual report rated one in four care homes for the elderly as being adequate at best and found large variations in areas and providers.
Poole, Cornwall, Solihull, Surrey, South Tyneside, Southwark, Peterborough and Bromley are to get extra support.
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The report covers independent providers of care services as well as an assessment of England's 148 local authorities.
It rated 95% of councils in the top two categories, which means they are performing well or excellently - and none was given the bottom "poor" rating.
'Raise the bar'
While the picture is of improvement, the commission said there are still too many vulnerable adults being failed by the system.
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And experts have suggested the top grades were achieved only because councils were providing care to fewer people.
More than 340,000 people in England receive care in their own home - a figure which has fallen by a fifth in the past eight years.
To cope with the demands they face, councils have been restricting who is eligible for free or subsidised care - social services is means-tested so that people with significant savings are excluded anyway.
The figures from the regulator showed seven in 10 councils only provide care to those with substantial needs - basically those who cannot do everyday tasks, such as washing, dressing and eating, without help.
It means there are thousands of people with so-called low or moderate needs who have been excluded from state support they would normally have been entitled to.
Despite the high ratings given to councils, the regulator recognised the problem.
It said it would be looking to "raise the bar" in the future and would pay particular attention to eligibility.
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The CQC also urged councils to do more to drive up standards in the voluntary and private sector.
From next year, changes to the ratings system will give more weight to the views of those using care services and fines will be able to be levied against providers the regulator considers are not providing a good enough service.
Most care homes and an increasingly significant amount of home care is delivered by 24,000 alternative providers.
Ratings for those showed one in six were ranked as poor or adequate - and the CQC warned they were risking fines or deregistration next year when the new system comes in place.
Care homes for older people were highlighted in particular for their poor record on providing social contact and activities for residents.
Councils purchase about half of the services provided by these groups and the CQC said they should look to focus their spending on only the best providers where possible.
CQC chief executive Cynthia Bower said the improvements in council services should be recognised, although they could still do much better on issues such as dignity and offering people more choice.
'Dignified lives'
But she also warned she was "deeply concerned" the expected squeeze on public sector spending could lead to greater restrictions on access.
"We all know there are choppy waters ahead so the issue is how well the system responds to the situation.
"We plan to be particularly vigilant about this on behalf of people who use services."
Andrew Harrop, head of public policy for the newly-merged Age Concern and Help the Aged charity, said some care homes were clearly still "not up to scratch".
And on tightening eligibility criteria, he added: "Local councils continue to deny many older people the care they need to live dignified and independent lives."
But Councillor David Rogers, of the Local Government Association, said: "Councils deserve great credit for their continued good work."
Bromley cited pressures "in managing significant increases in demand for social care services".
Solihull Council said it was "utterly committed" to working to improve services, while a spokesperson for South Tyneside Council said: "We welcome this support to help us move forward with our modernisation of adult social care."
Poverty has been rising in the UK since 2004 and is now at the same level as the start of the decade, a report by the Joseph Rowntree Foundation says.
The group said that issues of unemployment and the repossession of homes had become more acute before the recession started.
It said long-term solutions were needed to reverse the poverty trend.
But the report also pointed to improvements over the last decade, such as a decreasing fear of crime.
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It added that 11 to 16-year-olds were getting better basic school results, and there were fewer youngsters thrown out of school.
The rate of premature deaths is falling and infant mortality has also dropped over the past 10 years.
Turning point
The report - which is the Foundation's annual assessment of poverty in the UK - said that 2004-05 was a key turning point as that was when poverty, unemployment and property repossessions all started to rise.
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"The report highlights the scale of the challenge the government faces if it is to reduce poverty significantly in the UK," said Julia Unwin, chief executive of the Foundation.
"Although there was success in reversing long-term adverse trends in the first half of the last decade, the re-emergence of these problems indicates that poverty cannot be solved with short-term, reactive solutions."
The report, produced by the New Policy Institute, found that two million children lived in low-income, working households. This was the highest figure since the Foundation started collecting records.
Peter Kenway, co-author of the report, said that the tax credits system was tackling the symptoms, not the root cause, of the issue that many people were not getting enough income despite doing many hours of work each week.
He said that the solutions were "not obvious" but required a debate over subjects that some politicians considered taboo.
They included the fact that some people had been "taxed into poverty", as well as the effect of more women in the workforce and the impact of migration levels into the UK.
Political response
The government has repeated its commitment to eradicating child poverty by 2020.
"We are committed to fighting poverty and action we have taken has seen persistent poverty fall to its lowest ever level," said a spokeswoman for the Department for Work and Pensions.
"We know that work is the best route out of poverty and that is why we have invested £5bn since last November in creating jobs, bringing in front line advisers to Jobcentre Plus and expanding training and apprenticeships."
But shadow work and pensions secretary Theresa May said: "This report blows apart Labour's hollow claim to be the party of poverty.
"Gordon Brown spent far too much time during the good times boasting that he had ended boom and bust instead of actually getting on with the job of tackling the deep-rooted social problems plaguing Britain."
http://news.bbc.co.uk/1/hi/business/8392513.stm
http://www.jrf.org.uk/publications/monitoring-poverty-2009
Highlighting what older people in care homes want and need.
How can we ensure a 'better life' for older people in residential and nursing care homes when their voices are rarely heard?
This study examined the experiences and aspirations of these older people and highlights their ambition to increasingly influence decisions about care, support and wider issues such as:
- Whether or not to move to a care home
- What helps to enhance their quality of life
- What is needed to promote their inclusion in care home, family and wider community life.
More information about the Better Life programme is available here.
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Summary
Download as PDF, 4 pages, 0.08 MB
Finding out what determines'a good life'for older people in care homes
This study examined the experiences and aspirations of older people living in residential and nursing care homes. It highlights their ambition to increasingly influence decisions about care, support and wider issues such as whether or not to move to a care home, what helps to enhance their quality of life, and what is needed to promote their inclusion in care home, family and wider community life.
Key points
- The voices of older people who need a lot of support are largely absent; other people (professionals, families) speak for them.
- Older people most often move to a care home as a result of crisis, with no preparation and little or no planning. Most do not choose to be there.
- The circumstances that prompt a move into a care home are often not addressed in the home. People (older people and family members) are left to make the best of their new situation.
- Older people are perceived as commodities, not as consumers or citizens with rights, entitlements or purchasing power.
- Older people who need a lot of support are seen as a burden, with little or no expectation of a fulfilling life. Care homes focus on physical support through decline.
- Within the present system, some care homes are introducing small quality improvements. There is also evidence of a focus on structural change. Neither approach is sufficient to properly support the huge life changes involved, nor to promote positive life chances for older disabled people.
- When older people need a lot of support, organisational, policy and social responses remain deeply problematic. Substantial cultural and value changes are required to improve their quality of life.
The research
By researchers at the National Development Team for Inclusion
Background
Approximately half a million people live in care homes (the vast majority of whom are older people) but users are reputed to have little choice and control. The Joseph Rowntree Foundation (within its Independent Living Programme) is looking at key areas in the social care system to see if barriers to 'person-centred' support can be challenged and overcome.
This study specifically sets out to describe good practice that exists or could be put into practice to build a positive and aspirational vision of 'a good life' for older people with high support needs living in care homes. At the same time it recognises the reality of most people’s lives, and the capacity of the care home sector to deliver this vision.
The research team met with over 200 people including 84 older people living in care homes, extra care housing and supported family placements – quotes in this paper are all from older people living in care homes. Researchers and older people worked side by side, which allowed very different conversations to be held covering a range of experiences and support needs, including dementias. Commissioners and providers of local services, user and carer organisations, policy makers, academics and others with an interest in this area were also consulted.
Lack of a voice for older people with high support needs
There are assumptions (after decades of research and practice knowledge) that professionals know what older people need if they require a lot of support in their daily lives.
However, in the course of this study it became clear that the voices of these older people are so quiet as to be practically absent from discussions about their requirements and importantly their preferences and priorities. Professionals, relatives, commissioners, policy makers and politicians are those who most often speak on behalf of older people, and it is their voices that dominate in these debates. The evidence from this study is that:
- Many older people in residential, nursing care and extra care housing are living in situations that are not easy to talk about.
- Some have experienced frightening and difficult times: moving into residential care as the result of sudden illness or disability; being moved quickly without advance preparation; or not returning home from hospital before moving.
- A care home is an environment where, despite good intentions, there is a great imbalance of power between the residents and those providing care or support to them. This power imbalance can also arise when older people receive a lot of support at home. The central issue is the nature of the care/support: whether it is enabling or disabling; who delivers it; and their relationship with the older person.
- Low self-esteem amongst older people living in different kinds of supported accommodation (care homes, extra care, adult placement schemes) is a huge and multifaceted issue. Participants in this study had very low expectations of their quality of life, their surroundings, and themselves.
- Low expectations of a fulfilling life were also evident among those speaking about or on behalf of older people with high support needs. Their thinking is equally institutionalised. They are unable to imagine a different type of support from that currently offered.
I wouldn't tell anyone if I was depressed – just get on with it – which happens quite a lot.
Reasons for moving into care
A range of situations, events and circumstances lead older people into care, including:
- bereavement;
- concerns about health;
- poor or unsuitable housing;
- inadequate or unsatisfactory care or a breakdown in care arrangements at home; and
- other people's concerns and anxieties for their relatives'/ friends'/ patients'/clients' wellbeing, safety and protection.
It is very common for decisions to be made quickly and for events to develop at high speed when options for intensive support are being discussed – especially at times of crisis. Points of no return are reached rapidly, for example properties are sold, making it impossible to provide support at home.
I came here eight years ago. My sight was deteriorating, bad arthritis, wasn’t coping – my social worker bullied me into coming here.
Many of the older people who took part in the research did not want to end up living in a care home. Their situation had most commonly come about as 'a last resort' because few options or alternatives exist, or because people didn’t find out about them before moving.
I didn't make a conscious decision – I think I would have said I'd go home if anyone asked. Mind you I had the stairs and the bedroom was upstairs.
Problematic policy and practice
A key finding when reviewing reasons for moving into care is that it is usually other people (families, GPs, social workers) who are in control of older people's decisions, arrangements and financial transactions at this critical period in their lives – and this situation does not change once people have moved into a care home.
Many older people in the study were trying to 'make the best of it' in their new circumstances and they shared their stories about what helps them to do this, and what prevents them from doing so. Only a small number of people said that the change had been positive.
This third-party decision-making on a major life change seems to be acceptable only for older people. There is no current equivalent of this fast-track path into a care home among other groups of people needing support. The world of alternative and creative support has moved ahead much further outside the sphere of older people's long-term care services than within it, and there are increasingly many more support options available to other groups.
A fall whilst in hospital led to my GP deciding I should not return to live alone in my house
I didn't know about the home… but my daughter had enquired in other homes but found this one more acceptable for me
Dominance of money and market factors
It is clear from the study findings that older people with high support needs (in general) and the resident population of care homes (in particular) are regarded as and treated like commodities, not consumers with rights, entitlements or purchasing power. This became clear in discussions about money (what people are eligible to receive) and in the way that funding and market factors dominate discussions of long-term care (rather than a focus on older people's lives).
I had to sell my flat to pay for X care home so now I haven't got any choice – this is my home because it's all I've got left
No strong vision of a good life
An understanding of and focus on voice, choice and control – on self-determination and individual human requirements – is missing at all levels for older people with high support needs:
- in individual experiences of the support people receive and the options open to them;
- in wider support and commissioning decisions that affect local communities; and
- in research and policy frameworks that influence and guide practice.
There is a clear lack (particularly by comparison to other users of social care services) of a strong and unifying vision of a good life for older people with high support needs. The language of services and needs dominates. There has been an emphasis on better management, a modernisation agenda and structural change. Sympathetic and personal language is rarely used to describe older people needing a lot of support. The evidence suggests a need to refocus on a 'rights-based' approach – in words and experiences that make sense to and reflect the lives of older people who need a lot of support.
I'm new to this game and haven't forgotten the other game yet. When you let go of a lot that went before – what can you put in its place?
Cultural and structural change required
Evidence from the care homes, from discussions with residents, staff and others involved, and wider discussions show that current assumptions about care home practice remain ageist and problematic. Incremental quality improvements are not moving practice towards older people's ideas of a better life.
The evidence shows that 'dignity and respect' are low aspirations on which to build a challenging agenda for government policy and best practice guidance on long-term care. Whilst dignity and respect are key ingredients, a completely different approach is required, based on citizenship and beginning with an increased focus on personal identity, self-expression and individual aspirations, rights and circumstances.
Also required is a much deeper understanding from older people's perspectives of what needs to be changed in order to have a good life, rather than just relying on professionals' and others' views about high- quality services.
It would be great if we could use some of the fee we pay for our own leisure, maybe have someone for two hours each week to do what we want with us – take me out on the bus, sort out my wardrobe.
I wish I had the same person so I could get them into my routine… you end up having to fit in with their routines. I pay a lot of money here… I think it should be my routine that's found out and stuck to.
Conclusion
The study findings point to the need for a more positive picture of what 'a good life' looks like, even when a person needs a lot of support.
The most commonly mentioned areas were:
- people knowing and caring about you;
- the importance of belonging, relationships and links with your local or chosen communities;
- being able to contribute (to family, social, community and communal life) and being valued for what you do;
- being treated as an equal and as an adult;
- respect for your routines and commitments;
- being able to choose how to spend your time – pursuing interests, dreams and goals – and who you spend your time with;
- having and retaining your own sense of self and personal identity – including being able to express your views and feelings;
- feeling good about your surroundings, both shared and private; and
- getting out and about.
The evidence from this study is that personal identity and self-esteem (referred to over and over again in conversations and observations of care home life) – is often underplayed or not recognised in services and support arrangements. For older people, this element needs to be at the heart of future care provision.
About the project
The study reviewed existing literature on the subject of the voice, choice and control of older people with high support needs. A research team, including older researchers, worked in four study sites (three areas in England and one in Scotland) and had discussions with older people (living in seven care homes, two extra care housing schemes and two adult/family placement schemes) and other local stakeholders (commissioners, providers, carers and third sector organisations). A number of discussion events were also held to explore initial findings from the research. A call for information and examples of best practice provided further evidence of different approaches and knowledge about 'what works' in this area.
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http://www.jrf.org.uk/publications/older-people-vision-long-term-care
Annual Report and Roadmap
Presenting the Life Chances progress report 2009 and introducing Roadmap 2025
Annual Report 2009
- Annual Report 2009 (Full) (PDF, 18 pages, 880 KB)
- Annual Report 2009 (Easy Read) (PDF, 21 pages, 1.20 MB)
- Annual Report 2009 (audio) (mp3, 17:26 dur, 3.99 MB)
The annual Life Chances progress report 2009 highlights the achievements in delivering the government's vision of equality for disabled people by 2025.
The government has made significant progress in 2009 and now has a clear map for the road ahead. The new 'Roadmap 2025' identifies 14 themes that encompass all aspects of disabled people's lives. It shows how government departments are working together to deliver disability equality.
The Roadmap will also take the role of celebrating successes toward realising the vision for disability equality. It will be updated at least annually, and as a result, this is the last year we will be publishing a separate Annual Report.<!--
Annual Report 2008
- Annual Report 2008 (Full) (PDF, 84 pages, 4.08 MB)
- Annual Report 2008 (Easy Read) (PDF, 2.16 MB, 45 pages)
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Roadmap 2025
- Roadmap 2025 (full) (PDF, 64 pages, 2 MB)
- Roadmap 2025 (Easy Read) (PDF, 48 pages, 3.19 MB)
- Roadmap 2025 (poster) (PDF, 2 pages, 880 KB)
- Roadmap 2024 audio version
- Roadmap 2025 audio part 1 of 4 (mp3, 14:26 dur, 3.30 MB)
- Roadmap 2025 audio part 2 of 4 (mp3, 15:32 dur, 3.55 MB)
- Roadmap 2025 audio part 3 of 4 (mp3, 12:12 dur, 2.79 MB)
- Roadmap 2025 audio part 4 of 4 (mp3, 10:03 dur, 2.30 MB)
Disability Equality Indicators
Until 2008 the Annual Report was accompanied by an annex. This annex is now available as a detailed breakdown of indicators available from the Disability Equality Indicators page. This data provides supporting information on the initial set of measures and baseline information, developed in consultation with disabled people, against which progress to meeting the Government’s aims of disability equality by 2025 will be measured.
http://www.odi.gov.uk/research/annual-report.php
The final conference of the European Cities Against Child Poverty Network took place on Monday 30 November at Glaziers Hall, with delegates attending from across Europe. The event launched the network's final report on a two-year project, supported by London Councils, to address the root causes of child poverty in all partner cities through sharing practical experience and case studies.
http://www.againstchildpoverty.com/downloads/FinalReport-2009.pdf
http://www.againstchildpoverty.com/
The EU members are discussing a new directive for equal treatment of disabled people in Europe. This is a great opportunity to include the design of manufactured goods. Neither the DDA nor the new Equality Bill give disabled people rights to accessible products. The UK Government are opposing this opportunity.
There is a second issue. A new law is being negotiated that would significantly improve the rights of disabled people across the European Union when using buses and coaches. It would lead to mandatory training of transport staff (including bus drivers) and better information provision. The UK Government is trying to weaken the proposals.
We need you to tell Prime Minister Gordon Brown how important accessible goods and buses are for you.
We’ve joined forces with Sense, Leonard Cheshire Disability, RNIB and RNID. Go to http://campaigns.sense.org.uk/ea-campaign/clientcampaign.do?ea.client.id%20=150&ea.campaign.id=5567#email where you’ll find the link to our campaign, and a form to email Gordon Brown.
The latest edition of the LEPT Newsletter on the theme of Electric Vehicles. is now available to download. In this issue we highlight the excellent work being done in the area of Electric Vehicles by SWELTRAC and LB Camden, plus information about the potential EV project LEPT are working on with TfL, amongst others.
Along with all this we also have contributions from three Borough Officers about their latest conference experiences, news of a European Award or some of our ondon colleagues, and updates from our projects and quarterly meetings.
http://www.lept-eu.org/news_detail.asp?id=116