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Bridging the Gap

This article appeared in the Guardian on Wednesday February 06 2008 on p1 of the Society news & features section. It was last updated at 10:46 on February 06 2008.

Scottish Dementia Working Group members (from left) Lynda Hogg, James McKillop, Agnes Houston and Edward McLaughlin. Photograph: Chris James/ Epicscotland


Six years ago, James McKillop asked organisers of a carers' conference in Scotland if he could attend and give a talk. When his request was refused, he posed as a photographer, gained entry and had his say anyway. McKillop laughs at his audacity now, but it kickstarted a career as an unconventional campaigner and marked him out as a new kind of advocate for people with dementia.


"They wouldn't let me go [to the conference] because I had dementia," he recalls. "That got me going. When you get a diagnosis, you're in a vacuum. You're put out the door and left there. Doctors and nurses have their unions, carers have their groups, but there wasn't a single [user] group for people with dementia. I thought: 'This is all wrong.'"


One year after he was denied access, McKillop attended the carers' conference as a guest and official speaker. In the intervening 12 months, he had recruited a raft of like-minded people with dementia and helped set up the campaigning group, the Scottish Dementia Working Group (SDWG). Alongside the 60 or so people with dementia who signed up, he has managed to secure a voice for people diagnosed with dementia in the corridors of Scottish power.


Fuelled by a righteous anger, the group has written to "anyone we could think of", McKillop says. When he found out that for early diagnosis of Alzheimer's, the UK "was propping up the bottom" of European league tables, he set about telling medical professionals and politicians that it was "unacceptable".


The group vigorously lobbied politicians and ministers in both the Scottish executive and Westminster and insisted on being consulted on dementia policy. It travelled the UK and Europe giving talks to medical professionals, telling them to rethink what living with a diagnosis of dementia means, and calling for improvements in the way people with a diagnosis are cared for. It has regular meetings with the Scottish minister for public health, Shona Robinson, and is represented on policy body, the Scottish Dementia Forum. Members also sit on the national council of Alzheimer Scotland, which part-funds SDWG and provides it with premises.


McKillop insists that the perception that someone with dementia "must be old, in the later stages and not able to take care of themselves" needs to be challenged - and if that means being pushy, so be it. "There are very low expectations of people with dementia," he says. "They don't think you can do things. Why do people fear us getting together? What did they think we would do?"


He says that while recent movies such as The Savages, in which a brother and sister come to terms with their father's diagnosis, and Away from Her, for which the actor Julie Christie has been Oscar-nominated for her portrayal of someone with dementia, are keeping the disease in the headlines, they tend to focus on the later stages of the illness.


McKillop stresses that SDWG exists to remind people that late-stage is "only one part of the story". He says that while dementia has been climbing up the political agenda because of projected increases in people being diagnosed in an ageing population, there is still a gulf of understanding between them and the people who make decisions about their lives.


Edward McLaughlin, an early recruit to SDWG, says people with dementia have been left little choice but to shout about it. "In my case, I want to bite arses and open eyes," he says. "They will not listen to polite conversation. They will not listen to you just trying to exchange ideas with them. You've probably got to shock them. Even the medical professionals are in the dark ages on dementia. They have preconceived ideas."


Mental rut


At a meeting in Glasgow, members of the group explain why banging on doors and turning up at otherwise restricted conferences matters. "[Medical professionals] are in a mental rut and this is what we are trying to change," McLaughlin explains. "We try to get ourselves invited to all the conferences and tell them about reality."


Campaigns are based on issues raised by SDWG members. Carers and supporters can attend meetings and have their say, McKillop says, but he has made it a prerequisite that it is people with a diagnosis who retain control and determine strategy. Another longstanding member, Agnes Houston, says the group is vital because it sheds light on some of the most difficult aspects of receiving a diagnosis, such as stigma and lack of understanding from doctors. But it is also important, she says, because it does so by championing the rights and abilities of people with dementia.


"You go into a hospital and they think they know better," Houston says. "I think we're trying to reach out and educate everyone, and to say that dementia is not the end. When you get the diagnosis, it doesn't mean you have to crawl into the corner and die."


But not everything is about being angry and protesting, she adds. Having a sense of humour has proved to be a key plank in the group's strategy. It helps break down barriers if people are unsure of how to behave around someone with dementia, according to Houston. That is why some in the group are currently working on a dementia joke book.


A few weeks ago, McKillop gave a talk to a group of student nurses at Stirling University. According to Philip Bryers, national coordinator at Alzheimer Scotland for SDWG, it was the latest example of the effectiveness of the group's "bolshie" approach. Feedback from the students was effusive.


"It demonstrates the impact it has when someone with dementia speaks to a group of professionals from personal experience," Bryers says. "On lots of occasions, people have told us that hearing someone talking from experience is better than dozens of lectures from people who know the textbooks but don't have the experience."


Bryers says things have been changing in the last few years and that, by pushing so hard, the group is now being invited to all kinds of conferences. "I think that Alzheimer Scotland would not now put on a conference without having somewhere in the programme someone with a diagnosis of dementia. There has been a big change. If anything, we are suffering from overload. There are too many invitations cope with."


The group is proving so popular that a separate arm catering for the north-east of Scotland, and taking in the cities of Dundee and Aberdeen, has been established. The goal, Bryers says, is to cultivate groups across the country that can campaign on issues both locally and nationally.


Dot Weaks, the only nurse consultant for dementia in Scotland, wrote her PhD thesis on why early diagnosis can change lives, and she has become an active supporter of SDWG. Appointed in October last year by NHS Tayside and now a professional adviser to SDWG, she says the group is unique. "They are real campaigners. They make themselves heard. They have managed to get the ear of government, and that is a very powerful place to be. They are there at the centre of things with politicians and professionals."


Lagging behind


Unlike other service user movements, such as those for people with mental health problems or for carers, Weaks says, dementia has been lagging behind, but that SDWG is helping to change that. "People ask me what I think of their campaigning," she says. "I say I run in to the campaigns with them."


Daphne Wallace, chief executive of the Alzheimer's Society, says SDWG is a welcome addition to a dementia service user voice that is blossoming across the UK. Wallace, a psychiatrist who has been diagnosed with vascular dementia, puts the trend down to improvements in early diagnosis. More people being diagnosed early means more are able to become advocates, she says. "It's been assumed that people with dementia can't advocate," Wallace says. "Thanks to earlier diagnosis, people with dementia are being taken seriously." And the fact that a number of people with a diagnosis are being consulted for health minister Ivan Lewis's national dementia strategy is, she suggests, a sign of the times.


Recently, SDWG secured a three-year funding grant from Comic Relief that was matched by Alzheimer Scotland. It gives SDWG, McKillop says, a chance to "broaden out" the groups it advocates for. He is keen to work with organisations dealing with Down's syndrome, for example, to advise on how best to advocate for those who develop dementia.


Around the table in Glasgow, the group members agree that in the half decade since it was established, much progress has been made. Bryers says they are "extremely pleased" that government in Westminster and in Edinburgh appear to be acknowledging the scale of the challenge facing the whole of the UK in years to come, and they welcome the fact that dementia has been made a national policy priority in Scotland.


Alzheimer Scotland estimates that between 58,000 and 65,000 people have dementia in Scotland this year. It suggests that between 1,350 and 1,600 of these are under the age of 65. By 2031, the number of people with dementia in Scotland is expected to rise by 75% to between 102,000 and 114,000.


McKillop and the campaigners at SDWG see their job as making sure this does not automatically translate into thousands more people being regarded as on the scrapheap. With early diagnosis and the right treatment, McKillop says, many people such as him lead productive, happy lives for a considerable time. When it comes down to it, people with dementia want to be treated properly and taken seriously. "That's all we want," he says. "To be treated as human beings."

· Alzheimer Scotland is at alzscot.org; the Alzheimer's Society is at alzheimers.org.uk

"chemical cosh" early death risk

Patients with dementia are dying early because they are being prescribed sedative drugs inappropriately in nursing homes, warn researchers.


A five-year investigation revealed the antipsychotic drugs were being used as a 'chemical cosh' to control patients, contrary to expert advice.


Patients prescribed these drugs were dying on average six months earlier, the Alzheimer's Research Trust found.


But GPs said the drugs were only used "as a last resort".

The drugs were designed to treat schizophrenia

'Chemical cosh'


Guidelines say they can be given if the patient is severely agitated or violent.


But lead researcher Professor Clive Ballard says in the majority of cases the prescriptions are inappropriate and do more harm than good - doubling the risk of early death.


Estimates suggest that as many as 40% of nursing home residents with Alzheimer's disease - 150,000 people - are prescribed these drugs, known as neuroleptics.


Medicines safety experts know that patients with dementia are three times more likely to have a stroke if they take the drugs.


Professor Ballard and his colleagues from King's College London studied 165 residents with Alzheimer's disease at more than 100 UK nursing homes who were on a neuroleptic drug - chlorpromazine, haloperidol, risperidone, thioridazine or trifluoperazine.


They stopped the drugs for half of the patients and switched them onto dummy pills instead for 12 months.

Premature death


The differences in survival between the two groups were striking.


At 24 months, 78% of the dummy pill group were alive compared with 55% of those still on the neuroleptics.


At 36 months the figures were 62% versus 35%, and at 42 months 60% versus 25%.


Professor Clive Ballard said: "It is very clear that even over a six month period of treatment, there is no benefit of neuroleptics in treating the behaviour in people with Alzheimer's disease when the symptoms are mild."


Instead, psychological therapies should be used, he told the charity's conference in Edinburgh.


Rebecca Wood, chief executive of the Alzheimer's Research Trust, said: "These results are deeply troubling and highlight the urgent need to develop better treatments.


"Seven hundred thousand people are affected by dementia in the UK, a figure that will double in the next 30 years. The government needs to make Alzheimer's research funding a priority."


'Scandalous'


Neil Hunt, chief executive of the Alzheimer's Society, said: "It is a disturbing revelation that confirms some of our worst fears about neuroleptics, which have been the subject of numerous health warnings.


"It is a national scandal that people are being sedated in this way."


He said training for care staff must now be an urgent priority.


Professor Mayur Lakhani, chair of the Royal College of General Practitioners, said: "We would like to reassure patients, relatives and carers that neuroleptic drugs are not routinely prescribed to patients with dementia, and are used only as a last resort when patients suffer from severe episodes."


But he agreed that there needed to be vigilance about the prescribing of these drugs for dementia.


Sheila Scott of the National Care Association said: "There are some serious issues here that care homes, doctors and the Department of Health need to look at."


Gordon Lishman of Age Concern said: "Alzheimer's can be a very difficult condition for patients and those around them but the over reliance on sedatives is not the answer."


The Medicines and Healthcare products Regulatory Agency said it would continue to monitor the unlicensed use of neuroleptics in the treatment of patients with Alzheimer's disease and would carefully review the new study to see what further action might be necessary.

November 2006

A day out with the domiciliary workers


Domiciliary workers act as agents of independence, enabling older and disabled people to stay at home. But they have to put up with low pay. Anabel Unity Sale joins one worker for a Monday morning shift Home care is vital if older people are going to gain more independence, particularly as the population ages. But according to a recent report from the Commission for Social Care Inspection ,(1) services need a radical shake-up. CSCI reserved most of its criticism for council commissioning because of wide variations between areas in the number of people served and the quality of services. Also, contracts between councils and the service providers often cut the time home care staff spend with clients, with many visits lasting 30 minutes or less. And it pointed to serious recruitment and retention problems caused by poor pay and conditions. About 80 p

Posted: 16 November 2006 | Full Article


Opening Doors


A scheme being trialled in Nottinghamshire is extending the ethos of direct payments by allowing some service users to do their own assessments of their needs. Simon Creasey reports

Posted: 16 November 2006 | Full Article


Government U-turn on human rights vow to clients of private providers


The government has "seriously diluted" its commitment to ensuring that clients of independent care agencies are protected under the Human Rights Act 1998 it was claimed this week.

Posted: 15 November 2006 | Full Article


Inspectors to focus on dignity in care


Inspectors are to give higher priority to respect and dignity when they assess services for older people.

Posted: 15 November 2006 | Full Article


Minister leads on improving dignity in care for older people

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Posted: 14 November 2006 | Full Article


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Retirement pension

Who is it for? People reaching pension age (currently 60 for women and 65 for men). Can be deferred for up to 5 years. Obtain a pension forecast via form BR19 from local office. Who pays it? The Pensions Service (DWP) Which leaflet? And how is it claimed? NP46. Application forms usually sent out by TPS several months before. Can also be claimed over the phone and on-line. What are the age limits? 60 (women), 65 (men) but age for women being raised for people born after 6/4/1950 National Insurance based? Yes, but not for some people aged 80 and over. Widows and widowers can qualify for RP on spouse’s record (to include registered civil partners from December 2005). Means tested? No. There is also no restriction on amount of earnings. How long does it last? Unlimited. What is effect on

Posted: 10 November 2006 | Full Article


War Disablement Pension (various)

(claims for injuries on or after 06.04.05 will be considered under the Armed Forces Compensation Scheme) Who is it for? Ex-Service men and women, who were injured, disabled or have suffered an illness (physical or psychological) through service in HM Forces. There are also provisions for UDR. RIR, Home Guard, Civil Defence Volunteers, Merchant Seamen, and Polish Forces. Who pays it? Veterans Agency (VA) Norcross Blackpool Free Helpline 0800 169 2277 Tel(overseas) +441253866043 Minicom users 088 169 3458 E-mail [email protected] Internet www.veteransagency.mod.uk Which leaflet? How is it claimed? VA leaflets and claim forms on request. Helpline number. What are the age limits? No. National Insurance based?

Posted: 10 November 2006 | Full Article


Widow's Pension

Who is it for? Widows already getting it by 9/4/01, or aged 60-65 or widows who were getting widowed mothers allowance after 9/4/01 and are over 45 when it stops. Who pays it? Local Job Centre Plus office. Which leaflet? And how is it claimed? On form from Job Centre Plus office. What are the age limits? See under 'Who is it for?' above. National Insurance based? Yes, unless husband's death due to industrial accident or disease. Means tested? No. How long does it last? Stops at age 65 or on remarriage, civil partnership or cohabitation (including same sex) . What is effect on other benefits? Fully taken into account by all means tested benefits, but not SSP. Is it taxable? Yes. Increases for dependants? No.

Posted: 10 November 2006 | Full Article


Winter Fuel Payment

Who is it for? People aged 60 or over in qualifying week (week beginning on 3rd Monday in September) who are ordinarily resident in Great Britain. (and within EEA in some circumstances) Who pays it? DWP Which leaflet? And how is it claimed? Should be paid automatically but claims may be needed from people who are not in receipt of retirement pension or other benefits. Claim by 31/3/07 What are the age limits? 60 or over in qualifying week National Insurance based? No. Means tested? No How long does it last? Payment is annual. For 2006/7, the usual amount is £200 per household for those aged 60 to 79 and £300 per household for those aged 80 or over. What is effect on other benefits? None – disregarded as capital and income. Is it taxable? No.


Posted: 10 November 2006 | Full Article


60 second interview with shadow health minister Stephen O'Brien on Tory policies for adult social care


What are the Conservative priorities in adult social care? The question of funding looms large but we are also focusing on more effective personalised care, and supporting and championing carers.

Posted: 09 November 2006 | Full Article


Training Materials Review: Dementia Care Training Manual for Staff Working in Nursing and Residential Settings

This manual is linked to national occupational and vocational standards and can be used by individuals or groups, writes Carol Dutton.

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Residents fights on against transfer

Three care home residents who were refused permission to appeal against a High Court decision allowing a local authority to transfer homes to the independent sector will appeal again next month.

Posted: 09 November 2006 | Full Article


Frontlines: Living with Alzheimer' disease

Maisie used to run a large office. Now she can’t run her own life as she has Alzheimer’s.

Posted: 02 November 2006 | Full Article


October 2006


Charity calls for right to care advice

Older people should have the right to access independent advice on their long-term care options and the means of funding them, a Counsel and Care paper on care funding says today.

Posted: 31 October 2006 | Full Article


Question from community Care - Older people in residential care in Finland experience a much looser, less regulated environment than in the UK

Click on the headline to go therough to the article

Posted: 26 October 2006 | Full Article


A friendly eye

Scottish councils are increasingly looking at using technology to meet the needs of clients living in isolated communities. But is it right for everyone? Simon Creasey

Posted: 26 October 2006 | Full Article


'Rehabilitation brings efficiency savings’

Councils can improve outcomes and save money in adult care by switching existing resources into schemes to “re-able” people to live their lives independently.

Posted: 26 October 2006 | Full Article


Commissioning needs to move with the times if home care is to meet user demand

Council commissioners are in the firing line of a report revealing home care services are inflexible and highly rationed, reports Josephine Hocking

Posted: 26 October 2006 | Full Article


Older people in residential care in Finland experience a much looser, less regulated environment than in the UK

Mark Lloyd’s comparison of older people’s care in Finland with that in the UK begs the question of whether we have sacrificed quality of life to safety and regulation

Posted: 26 October 2006 | Full Article


Older people lobby parliament to increase state pension

An estimated 1000 pensioners are lobbying parliament today in protest against the government’s failure to increase the value of the basic state pension immediately.

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Is telecare 'care'?

Can the use of telecare systems tip the balance in allowing vulnerable people to live independently or are they merely a useful adjunct to existing modes of care? David Potter reports

Posted: 19 October 2006 | Full Article


Editorial comment: A line in the sand

In the heart of the New Forest something of a modern-day Robin Hood tale is emerging.

Posted: 19 October 2006 | Full Article


Alzheimer’s drug appeal rejected

The National Institute for Health and Clinical Excellence has been condemned for rejecting appeals against its decision to restrict NHS access to four Alzheimer’s drugs.

Posted: 19 October 2006 | Full Article


A project for older carers in Southwark, south London

As people with learning difficulties live longer their carers become correspondingly older. A council project in south London is helping meet the needs of older carers. Graham Hopkins reports

Posted: 19 October 2006 | Full Article


Parties fall in with Wanless thinking

All three main political parties recognise the current funding system for adult social care is not sustainable, the author of a landmark prospectus for change said this week.

Posted: 12 October 2006 | Full Article


Staff may strike against Care UK

Care UK could face industrial action in Islington, north London, over plans to halve pay and change conditions for some staff.

Posted: 12 October 2006 | Full Article


Wandsworth set to pay back care fees

Wandsworth Council looks set to give £27,000 to a woman who paid the sum in “unnecessary” nursing care fees for her mother.

Posted: 12 October 2006 | Full Article


Restriction on Alzheimer's drugs by Nice condemned

The National Institute for Health and Clinical Excellence has been condemned today by campaigners for rejecting an appeal against its decision to restrict NHS access to four Alzheimer’s drugs.

Posted: 11 October 2006 | Full Article


Wanless: Political consensus on need for reform of adult social care funding

Derek Wanless said today that all three main political parties recognise the current funding system for adult social care is not sustainable.

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More intermediate care needed to promote service user independence

A leading adult social care director yesterday called for a big increase in intermediate care services to meet the government’s objectives of promoting independence and choice for service users.

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Council must pay back nursing care fees after wrong assessment of needs

Wandsworth Council should pay £27,000 to a woman who paid the sum in “unnecessary” nursing care fees for her mother, the local government ombudsman said today.

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The Essential Carer’s Guide

Anyone caring for elderly relatives or friends must have a copy of this excellent book which is full of sensitive, caring practical advice and resources, writes Merle Fletcher.

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To mark World Mental Health Day on 10 October, and as Mind’s celebrates its 60th anniversary, Prabjit Korotana salutes the gains that have been made in treating mental health patients in the past 60 years and looks too the future.

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September 2006

Open Forum - 28 September

Les Bright describes how a service user organisation in Exeter has struck a blow for older people

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Kent partnership to build 350 flats

More than 350 flats for older and vulnerable people are to be built in Kent in a £72m private finance initiative project.

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Chancellor Gordon Brown’s conference pledge to provide greater recognition for carers needs to be translated into a fair settlement for the group in next year’s comprehensive spending review, campaigners said this week.

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End of life care for people from ethnic minorities

As ethnic minority populations age in the UK how can we ensure that they receive responsive end of life care? Yasmin Gunaratnam discusses the challenges for social work

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Funding gap widens for personal care

Scotland’s councils face a £79m gap in funding the cost of the country’s free personal care policy this year, a report has revealed.

Posted: 28 September 2006 | Full Article


Social care spending may lose out to education, hints Gordon Brown

Chancellor Gordon Brown today labelled key social care issues as “the greatest failures of social policy” historically but said education would be the top priority in a Brown-led government.

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Livingstone backs direct payments

London mayor Ken Livingstone has pledged action on direct payments and older people’s mental health in a strategy for the capital’s older people.

Posted: 21 September 2006 | Full Article


Back in the loop

Joe Ethell, who is deafblind and lives alone, was becoming isolated before social services intervened

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Services denied as eligibility tightens

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Council charges for social care vary greatly, report finds

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Posted: 21 September 2006 | Full Article


A third of town halls have cut back help for the elderly

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Posted: 21 September 2006 | Full Article


Scottish councils need more funds for free personal care

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Posted: 20 September 2006 | Full Article


Livingstone tells London councils to improve services for older people

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Posted: 18 September 2006 | Full Article


Tighter Wiltshire criteria hits users

More than a third of people with learning difficulties and a quarter of older people receiving day services in Wiltshire are likely to lose their entitlement to services under a tightening of the council’s eligibility criteria.

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The government yesterday announced £50 million of funding for hospices caring for older people nearing the end of their lives.

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Platt says councils favour older people

Many councils focus overly on residential care and on older people’s services at the expense of those for younger adults, Denise Platt has said.

Posted: 14 September 2006 | Full Article


Byers wants greater priority for older people

Stephen Byers, the former cabinet minister, today called for older people to be given much greater political priority. Delivering charity Counsel and Care’s annual Graham Lecture, Byers called for a new target to reduce pensioner poverty and for the carer’s allowance to be extended to pensioners, the latter at a cost of around £150m a year.

Posted: 07 September 2006 | Full Article


Scots fail to quell food charge row

The Scottish executive's response last week to the free personal care inquiry has failed to address two key issues undermining the policy, campaign groups have said.

Posted: 07 September 2006 | Full Article


The plight of older prisoners

Over-60s are the fastest growing group of prisoners. But their mental, social and physical well-being can suffer, even after release, as the needs of younger inmates dominate the system, writes Terry Philpot

Posted: 07 September 2006 | Full Article


Training Materials Review: Reminiscence and Recall - A Practical Guide to Reminiscence Work

Faith Gibson's enthusiasm for reminiscence work shines out of every page, writes Joy Bounds.

Posted: 07 September 2006 | Full Article


Day services cut by Wiltshire Council

Wiltshire Council revealed yesterday that around 220 people with learning difficulties and 150 older people will lose access to day services under changes to eligibility criteria.

Posted: 06 September 2006 | Full Article

August 2006

Nutrition fears over hospital food care

Older people face a greater risk of malnutrition because nine out of 10 nurses do not have time to help hospital patients who need help with eating, Age Concern has said.

Posted: 31 August 2006 | Full Article


TV Review: Real Story

Fiona Bruce opened the programme stating the importance of dignity and respect, but the chilling facts that emerged suggested that these were alien concepts at Maypole Nursing Home, writes Les Bright.

Posted: 31 August 2006 | Full Article


Hewitt joins call for debate on charging

Health secretary Patricia Hewitt has said the country needs to follow the recent debate on pensions with one on social care charging, in response to the ageing population.

Posted: 30 August 2006 | Full Article


Housing schemes failing older people

Regeneration and housing development programmes are failing to take account of older people's housing needs, according to a report compiled by the charity Help the Aged.

Posted: 24 August 2006 | Full Article


Cash boost for Scottish telecare

All 32 of Scotland's councils are to receive a share of an £8m Scottish executive fund to develop telecare services.

Posted: 24 August 2006 | Full Article


Older people and advocacy

The role of advocates is poorly understood, but they do prevent many older people dropping off the social care radar, reports Anita Pati

Posted: 24 August 2006 | Full Article


Integration poor for electronic records

Integration between the various electronic systems for social care and health is poor and areas are pursuing different solutions, which is leading to duplication, a government report has claimed.

Posted: 24 August 2006 | Full Article


Heng: The deaths caused by the 2003 heatwave in France prompted a national debate about care for vulnerable people

When thousands of older and disabled French people died in the 2003 heatwave, it was a national scandal.

Posted: 24 August 2006 | Full Article


Ageing population continues to rise

The number of people aged over 85 grew by 6 per cent in 2004-5, 10 times the increase in the general population, figures released today show.

Posted: 24 August 2006 | Full Article


60 second interview with Professor Susan Benbow on older people with mental illness

The Royal College of Psychiatrists called for improved services for older people with mental illness last week in a new report. Professor Susan Benbow is one of the authors.

Posted: 22 August 2006 | Full Article


Fines mooted for councils keeping older mentally ill people in hospital due to lack of social care

The government should consider extending the system by which councils are fined for delayed discharges from hospital to older people with mental health problems, psychiatrists’ leaders said yesterday.

Posted: 18 August 2006 | Full Article


TUC calls for end to age discrimination

The government and employers must tackle age discrimination and provide more training and support to older workers to ensure they do not end up on benefits and put more pressure on pensions.

Posted: 18 August 2006 | Full Article


Simon Heng: Support and benefit systems discriminate against older people who become disabled

After struggling for years to achieve my independence as a disabled person, I allowed myself to think about the future.

Posted: 18 August 2006 | Full Article


Essex hotel specialises in holidays for older people and disabled people

A hotel with a difference is drawing holidaymakers to the seaside in Essex. Natalie Valios visited the Grosvenor Hotel at Westcliff, which specialises in breaks for older people and their carers

Posted: 18 August 2006 | Full Article


Charity to help returning Britons

A charity based at Heathrow Airport is to work with UK consulates overseas to help Britons who are forced to return to the UK for social care.

Posted: 18 August 2006 | Full Article


Too many older people live in poor housing, claims charity

Too many older people are living in poor quality housing and lack choices over where they can live, a Help the Aged report published yesterday has claimed.

Posted: 17 August 2006 | Full Article


Councils to gain share of £40m fund

Social services departments in England can bid for a share of a £40m pot to develop extra care housing schemes in 2007-8.

Posted: 10 August 2006 | Full Article


Comment: How phone calls can become a nuisance

The phone can be such a help for vulnerable people but call centres are often the reverse, argues Jennifer Harvey

Posted: 10 August 2006 | Full Article


Funding ‘must be more transparent’

A new government strategy for end-of-life care in England should look at creating a more transparent funding system for the voluntary sector, a charity says.

Posted: 07 August 2006 | Full Article


Separate client group assessments planned for adult social services

Councils will be judged separately on their performance for each adult social care client group in the future, to counter concerns that older people’s services dominate current assessments.

Posted: 07 August 2006 | Full Article


July 2006


Wiltshire Council staff under pressure over cuts in services

Adult services staff in Wiltshire are being placed under huge stress by the council’s cuts to services, Unison has claimed.

Posted: 28 July 2006 | Full Article


Advocacy and older people - special report

Older people – along with the rest of the general public - do not know what advocacy is and as a result are unlikely to request it, according to a new report from the Older People’s Advocacy Alliance published last week.

Posted: 28 July 2006 | Full Article


Strategy for end-of-life care planned

A new government strategy for end-of-life care in England will look at funding for hospices, choice for patients and quality of care.

Posted: 27 July 2006 | Full Article


Act to create Welsh older people's commissioner

Legislation to establish a champion for older people in Wales received royal assent on Tuesday.

Posted: 27 July 2006 | Full Article


If you ask me...Raymond Morling

Raymond Morling, 82, has learning difficulties and is a Craegmoor Healthcare resident

Posted: 27 July 2006 | Full Article


Advocacy provision is patchy in England

One-to-one advocacy provision for older people is thin on the ground and unevenly distributed across England, a national mapping exercise has found.

Posted: 27 July 2006 | Full Article


Council proposes priority groups

Children's home and domiciliary care staff would be the next groups to face compulsory registration, under recommendations to ministers from the General Social Care Council.

Posted: 27 July 2006 | Full Article


Care trusts

The care trust is an NHS organisation to which local authorities can delegate health-related functions to provide integrated local health and social care. Dropped from the Health Act as an expedient to get the legislation through with the dissolution of parliament in 2001, care trusts re-emerged to be established on a voluntary basis in partnership where there is a joint agreement at local level that this is the best way to offer services. The first trusts were created in Bradford, Camden and Islington, Manchester and Northumberland and in October of that year another came into being in Witham, Braintree and Halstead. Local councils and primary care trusts (qv) and primary care groups (qv) can apply for them to be set up in their areas. According to government they are not a takeover of existing health and local authority functions but a “pragmatic way forward” to “broaden the range of possible options” for integrated care. They are single-sys

Posted: 26 July 2006 | Full Article


Experience Corps

This is one of the least known of all the new agencies. It was launched as an independent company in November 2001. It was an England-wide scheme to encourage older people to volunteer but it particularly targets the 50-65 year old age group. It was backed by government funding of £20 million over three years. However, in March 2004 it developed into a “brokering agency” to act as an intermediary between people and the private and public sectors developing a range of services. It now aims to inform public policy and delivery programmes and offer creative solutions for companies needing to improve their competitive edge. It does this by marketing testing and research, making use of an extensive database of 230,000 members over the age of 50. Chief executive: Maggie Semple Chair: Baroness Greengross Address: 117 Waterloo Road, London SE1 8UL Telephone: 0207 921 0565 Website:

Posted: 26 July 2006 | Full Article


Better Government for Older People Network

Better Government for Older People (then minus the “network”) was set up by the government in 1998 to oversee 28 research projects on the engagement of older people (defined as those aged 50 and above) in a variety of services. When the initiative ended when the research projects were wound up, “Network” was added and BGOP took into its membership 350 local member organisations to receive and share good practice. The members and subscribers – local authorities, health agencies and voluntary organisations, receive a range of services to help them to work together with the BGOP’s aim of encouraging older people to achieve participation and citizenship and to bridge the gap between the policy intentions of local and central government and others and local implementation. Matters like regeneration, Best Value, public service agreements, nat

Posted: 26 July 2006 | Full Article


Wiltshire Council consults with service users over care rationing

Wiltshire Council is to launch a major consultation with service users over plans to ration social care and cut the costs of transporting people to day services.

Posted: 26 July 2006 | Full Article


New Deal

This is part of the government’s welfare to work strategy. It was created to help unemployed people into work by closing the gap between the skills employers want and the skills people can offer. It breaks its work down on the basis of three age groups. First are the 18-24 year olds who have been claiming jobseeker’s allowance for six months or more. Then there are those aged 25 and over who have been in receipt of the allowance for 18 months or more out of the last 21. The last age group are people who are 50 and older who have been claiming benefits others than a jobseeker’s allowance. New Deal also offers help to those who want to work for themselves. The New Deal for Lone Parents is part of the New Deal and is for anyone looking after one school-aged child on their own and claiming income support. Lone parents aged 18-24 are covered by the New Deal for young people. Other New Deal target groups are disabled people claiming incapacity benefit but for t

Posted: 21 July 2006 | Full Article


Caring for her parents, Jennifer Harvey finds that it is her turn to be overwhelmed by visits from social care professionals

I have had to contact a lot of people lately: two social workers, a psychiatrist, a gastroenterologist, a GP, several nurses, an audiologist, two benefits advisers and three carers.

Posted: 20 July 2006 | Full Article


Mind cool on Welsh mental health drafts

Early drafts of an action plan to promote better mental health for older people in Wales have come under attack from Mind Cymru.

Posted: 20 July 2006 | Full Article


Stroke care may move out of hospitals into community

Older people’s tsar Professor Ian Philp is to examine how health treatments, including stroke care, can be moved out of hospitals into community settings, the government announced today.

Posted: 18 July 2006 | Full Article


Supporting People

This programme aims to improve the quality of the lives of vulnerable people – from young people to older people with learning disabilities by proving a stable environment which enables greater independence. It supports high-quality and strategically planned housing-related services that are cost effective and reliable and complement existing care services. The emphasis is on making planning and development needs led. The programme works in partnership with government, voluntary agencies, public bodies, support agencies and service users. Address: 1/G6 Eland House,

Posted: 17 July 2006 | Full Article


Private care providers not subject to Human Rights Act

Older people’s charities, human rights activists and ministers had their hopes of making independent care providers subject to the Human Rights Act 1998 dashed earlier this week in a High Court ruling in a test case.

Posted: 14 July 2006 | Full Article


hard cho ices, little thanks

A 95-year-old woman in failing health lives in squalor by choice with her family, who obstruct attempts to assess her needs. Kristina Powney tells Graham Hopkins how she went about the task of persuading her to go to a nursing home

Posted: 13 July 2006 | Full Article


Officials lay out action plan to cope with feared expats' care timebomb

Civil servants have drawn up an action plan to tackle fears that services could be overwhelmed by British expatriates returning to the UK for care when they develop conditions such as dementia.

Posted: 06 July 2006 | Full Article


Care homes key for 'highly dependent'

Care home leaders and older people's charities have claimed a census of over 30,000 residents proves the need for a flourishing residential care sector to cater for highly dependent people.

Posted: 06 July 2006 | Full Article


Polish older man, a war veteran, needs more home support

A Polish man who served with the RAF in the second world war has become a recluse and is struggling on everyday tasks

Posted: 06 July 2006 | Full Article


Poverty target for older people should be introduced

The government should consider matching its child poverty target with an equivalent goal for pensioners to help the significant minority of older people who are socially excluded.

Posted: 04 July 2006 | Full Article


Government launches one-stop-shops for older people

One-stop-shops providing services for socially excluded older people were launched today by pensions ministerJames Purnell at one of eight pilot sites in the London borough of Tower Hamlets.

Posted: 03 July 2006 | Full Article


June 2006


New proposals to close Bournewood gap introduced

New proposals aimed at closing the ‘Bournewood gap’ have been announced by health minister Rosie Winterton today in a bid to benefit people who lack capacity.

Posted: 30 June 2006 | Full Article


Welsh commissioner to get more powers

Campaigners have won a major victory in gaining more powers for the Welsh older people's commissioner.

Posted: 29 June 2006 | Full Article


Active steps to prevention

A shift towards more preventive services is paying dividends in reducing older people's stays in hospitals, write Gerald Wistow and Derek King, who present early results from the Innovation Forum's older people project

Posted: 29 June 2006 | Full Article


Fresh moves to help voluntary sector provide public services

A string of initiatives to involve the voluntary sector more in the provision of public services was announced yesterday. A new board involving central and local government will work on developing councils’ relationship with voluntary organisations.

Posted: 23 June 2006 | Full Article


Staffing key to dignity in care

Better paid and increased numbers of staff, better training and tougher penalties for failing agencies are crucial to improving care for older people, the Department of Health has been told.

Posted: 23 June 2006 | Full Article


Fresh moves to help voluntary sector provide public services

A string of initiatives to involve the voluntary sector more in the provision of public services was announced yesterday. A new board involving central and local government will work on developing councils’ relationship with voluntary organisations.

Posted: 23 June 2006 | Full Article


Call for costs review as waiting lists and meal charges undermine free care policy

Scottish MSPs say free care is good for service users but it must be made financially viable. Derren Hayes reports

Posted: 23 June 2006 | Full Article


Euro warning over dementia neglect

The European Commission has been criticised for producing a green paper on mental health that "barely mentions" dementia, despite the growing numbers of people being diagnosed with the condition.

Posted: 23 June 2006 | Full Article


Ageism in management shown by use of 'elderly'

Senior managers in older people's services are not immune to the stereotypical thinking that reinforces ageism, says Blair McPherson

Posted: 22 June 2006 | Full Article


Sixty Second Interview with Martin Green

Martin Green is chief executive of the English Community Care Association, whose members are voluntary and private sector residential and nursing care home providers for adults. ECCA published a poll about fee increases by local authorities this week.

Posted: 21 June 2006 | Full Article


Age Concern attacks government over continuing care

Age Concern has attacked new proposals on NHS continuing care published today by the government.

Posted: 20 June 2006 | Full Article


Improving dignity for older service users

Better paid and increased numbers of staff, improved training and tougher penalties for failing agencies are crucial to improving dignity in care for older people, professionals and service users have told the Department of Health.

Posted: 19 June 2006 | Full Article


Scottish executive called upon to 'adequately finance' personal care

Problems in funding free personal care for older people in Scotland must be resolved if the success of the policy is not to be undermined, a major inquiry has found.

Posted: 19 June 2006 | Full Article


Community Care to report on European social services conference

www.communitycare.co.uk will next week be bringing you immediate coverage from the 14th European Social Services conference in Vienna.

Posted: 16 June 2006 | Full Article


Blueprint for Living: An Agewell Art Project

A busy hospital entrance is transformed by the presence of seven images by Angela Easterling of older people enjoying a range of physical activities, including "aquacise" and yoga, writes Kathryn Stone.

Posted: 15 June 2006 | Full Article


A little extra

Knocking down familiar residential care homes to replace them with new extra care units provoked concern from staff and older people. Nancy Nelson talks to Graham Hopkins.

Posted: 15 June 2006 | Full Article


Nine years on, the Bournewood gap remains as wide as ever

Campaigners have rejected new proposals covering the detention and rights of people who lack mental capacity amid disquiet over appeals procedures. Helen McCormack reports.

Posted: 15 June 2006 | Full Article


My practice

James Lampert has become involved with a project to develop an online occupational therapy self-assessment in Kent.

Posted: 15 June 2006 | Full Article


Open Forum

The collapse of joint working in Wiltshire is symptomatic of a wider malaise, writes Christopher Chorley.

Posted: 15 June 2006 | Full Article


Government announces new social exclusion agenda to tackle deep-seated disadvantage

The Social Exclusion Unit is to be disbanded and replaced by a new Social Exclusion Taskforce aimed at reaching the most hard to reach groups, it was announced yesterday.

Posted: 14 June 2006 | Full Article


Problems in funding free personal care in Scotland need resolving

Problems in funding free personal care for older people in Scotland must be resolved if the success of the policy is not to be undermined, a major inquiry has found.

Posted: 13 June 2006 | Full Article


Call for more clarity on advocates' role

Planned government guidance on the new Mental Capacity Act must give more clarity on the role of advocates, campaigners have warned.

Posted: 12 June 2006 | Full Article


Human rights laws are no aid to users

The potential for human rights principles to improve older people's services is not being fulfilled because of ignorance among service providers and suspicion among older people, according to a report published this week.

Posted: 12 June 2006 | Full Article


Care home regulations introduced

New regulations requiring care homes to provide clear information on terms and conditions have been announced by care services minister Ivan Lewis.

Posted: 09 June 2006 | Full Article


Human rights principles are not improving older people's lives

The potential for human rights principles to improve older people’s services is not being fulfilled due to ignorance about them among service providers and suspicion among older people, a report out today says.

Posted: 07 June 2006 | Full Article


Argyll and Bute hits back over free personal care criticism

Argyll and Bute Council has hit back at criticism which claimed the council had denied more than 200 older people access to free personal care.

Posted: 06 June 2006 | Full Article


Prisoners should be freed to ease overcrowding

Thousands of remand prisoners, inmates with mental health problems and children behind bars should be released to relieve the growing overcrowding crisis in prisons in England and Wales, according to a damning report the Commons public accounts committee.

Posted: 06 June 2006 | Full Article


Social worker jailed for client sex

A social worker has been jailed for having an affair with a married women who was suffering from post-natal depression, even though she consented to sex.

Posted: 05 June 2006 | Full Article



End of life care needs greater attention

One in five of all deaths is in a care home, so a new guide to providing end of life care for residents published this week should prove useful.

Posted: 02 June 2006 | Full Article


Reining in a free spirit

A woman of 90 kept walking out of her care home, raising questions about why she did it and also concerns for her safety. But once her motivation became clear, steps could be taken to control her tendencies, say Jo Phelps and Debbie Williams.

Posted: 02 June 2006 | Full Article


Pension adjustment delay under attack

Older people's charities have criticised the government's pension plans as doing too little to tackle poverty, but campaigners backed proposals to help carers. Age Concern and Help the Aged warned many older people would be left in poverty because of the decision in last week's pensions white paper to delay adjusting the basic state pension in line with earnings, as opposed to prices, until 2012. Age Concern said the state pension, now worth 84 a week for a single person, would fall to 72 in today's terms by 2012. The government said it intended to uprate the guarantee pension credit, now worth 114 a week, with earnings beyond 2008, to help low-income pensioners. Carers UK welcomed moves to prevent the system penalising carers. Those who care for disabled people for 20 hours or more a week will receive credits for the basic and state second pensions. Only t

Posted: 02 June 2006 | Full Article


May 2006


New guidance for care homes on end of life care

Care home managers are to be targeted with new guidance detailing how to improve end of life care for residents.

Posted: 29 May 2006 | Full Article


Sixty Second Interview with Martin Green

Martin Green is chief executive of the English Community Care Association, whose members are voluntary and private sector residential and nursing care home providers for adults. ECCA published a poll about fee increases by local authorities this week.

Posted: 26 May 2006 | Full Article


Palliative care needs further funding to meet cultural needs

More funding is needed in palliative care services to ensure they are meeting the cultural needs of older ethnic minority people, a new report has said.

Posted: 26 May 2006 | Full Article


Frontlines - Funding older people's care

I sometimes wonder if the Wanless recommendations will come in time to protect my inheritance, or if it will be whittled away by means-testing.

Posted: 18 May 2006 | Full Article


Treasury highly unlikely to fund Wanless's call for a guaranteed free minimum level of service for all older people

The Treasury is examining how a more modest version of the funding proposal put forward by the Wanless social care review may work in practice, Community Care Live heard yesterday.

Posted: 18 May 2006 | Full Article


Department of Health calls for social workers' views

The Department of Health is seeking social care staff’s views on and experiences of the treatment of older people in the care system, as part of its campaign to promote dignity. The initiative was outlined by care services minister Ivan Lewis in his speech to Community Care Live yesterday, as he launched a new section of the DH website devoted to dignity in care. To respond, visit www.dh.gov.uk/dignityincare Click HERE for all today's articles from the exhibition

Posted: 18 May 2006 | Full Article


Fair grounds for attraction

Where there are high proportions of older people in local populations, the recruitment and retention of care workers is particularly important. Julie Griffiths finds out how Blackpool Council has developed two schemes to make the job more attractive for existing and future staff.

Posted: 18 May 2006 | Full Article


Closing credit

Three years ago, Lancashire Council embarked on an ambitious and controversial programme to transform residential care services. Despite initial concerns, clients are now beginning to reap the rewards. Derren Hayes reports

Posted: 18 May 2006 | Full Article


Boy of 9 faces rape charge

Boy of 9 faces rape charge

Posted: 12 May 2006 | Full Article


Model Village

With a dispersed and ageing population, Cumbria has embraced technology to build a virtual care village. Graham Hopkins reports

Posted: 12 May 2006 | Full Article


Executive urged to invest in telecare

Scottish officials must invest far more money in technology to enable people to live in their own homes longer, according to experts in older people's services.

Posted: 11 May 2006 | Full Article


Flexible working plan 'ignores realities of caring'

The Work and Families Bill will give carers the right to request flexible working. But campaigners are concerned that the government's definition of a carer is restrictive, writes Gordon Carson

Posted: 11 May 2006 | Full Article


Sixty Second Interview with Gordon Lishman

Sixty Second Interview with Gordon Lishman

Posted: 10 May 2006 | Full Article


New care services minister to address Community Care Live

The new minister for care services Ivan Lewis will be attending our massive two-day annual event Community Care Live 2006 next week.

Posted: 08 May 2006 | Full Article


Call to implement Rowntree blueprint

Reforms to older people's care proposed in a report last week should be implemented now, campaigners have said.

Posted: 04 May 2006 | Full Article


Back in the firing line

Rather like continental drift, the evolution of social policy takes time to change the world.

Posted: 04 May 2006 | Full Article


Mental health and older people’s services feel brunt of NHS cash cuts

NHS cuts in England are falling on older people’s and mental health services as trusts battle to clear overall deficits of £900m, it was claimed this week.

Posted: 04 May 2006 | Full Article


Fixed payment scheme proposed

People should pay a fixed proportion of their long-term care costs, with the state contributing most, to ensure an equitable system,a report recommends.

Posted: 04 May 2006 | Full Article


Care charges too complex to grasp

The system of charging for care is too complicated for people to understand even after explanation, according to an Age Concern study.

Posted: 03 May 2006 | Full Article


Eighty years old but nothing like the Queen

David Donnison is one of the great figures of British social policy. Last month, the urban studies department of Glasgow University, where he is emeritus professor, hosted a reception and lecture by David to mark his 80th birthday.

Posted: 03 May 2006 | Full Article


The Big Questions

The government is pledging zero tolerance on elder abuse. Will this be effective?

Posted: 03 May 2006 | Full Article


'Don't cart me off'

The death of her husband has left an 88-year-old woman trauma tised, isolated and unable to cope alone. Our panel advises

Posted: 03 May 2006 | Full Article

'Living will' proposals revealed

Details of plans to allow people to make a "living will" to determine their medical care in advance of incapacity have been unveiled by the government.


Patients with conditions such as Alzheimer's will be able to give "lasting powers of attorney" to a family member or friend.


That person would then be able to make decisions about treatment - including whether to withdraw it.


Critics fear the plans are a step towards legalising euthanasia.

And some doctors have expressed concerns that refusing to comply with the terms of a living will which stipulated that treatment should be withheld could see them criminalised.


However, the British Medical Association said it was less concerned.


A spokesperson said: "The BMA believes that it would be unlikely that a health professional, who conscientiously objects to fulfilling a patient's advance directive requiring the withdrawal of life-sustaining treatment, but makes a prompt referral to another doctor, would be liable for prosecution.


"However, where a health professional deliberately attempted to frustrate the terms of a valid and applicable advance directive, he or she would be acting outside the law and the BMA could not support them."

Consultation


The draft Code of Practice for implementing the 2004 Mental Capacity Act will now be put out for consultation.


Previously the law has only permitted financial matters to be delegated.


Ministers say the aim of the legislation is to provide a "broad framework" to protect the two million adults in Britain who at some point become unable to make decisions for themselves due to disability or mental illness.


Health Minister Rosie Winterton said: "The Mental Capacity Act is an important step towards empowering vulnerable people who lack mental capacity to make decisions for themselves.


"The Code of Practice will ensure that best practice is followed and strict safeguards are in place to protect these most vulnerable people."


The guide includes an explanation of what it means when a person lacks capacity to make a decision, and of how to make decisions that are in that person's best interests.


It also spells out provisions and safeguards relating to advance decisions to refuse medical treatment in specified circumstances.


In addition, it gives details of the duties and responsibilities of healthcare professionals involved in such treatment and the advice and support available to them.


A spokesperson for Care Not Killing, an alliance representing 28 organisations promoting palliative care and opposed to euthanasia, said: "We look forward to working with the government and other stakeholders to ensure that the final codes of practice do not leave any loopholes to euthanasia by the back door.


"It is essential that doctors are not put in a position where they are forced to abide by advance refusals that they believe are not in their patient's best interests, clinically inappropriate or suicidally motivated."