Carer's News

Carers will be disproportionately hit by government benefit cuts over the coming years, research published today shows.

Tax and benefit changes from 2010-15 will result in a real terms drop of 6% in net income for households where a person claims carer's allowance, compared with a 4% fall for other households, found an analysis by the Institute for Fiscal Studies, commissioned by the Family and Parenting Institute.

The difference reflects the extent to which government benefit cuts are hitting disabled people cared for by loved-ones at home.

In particular, it arises from the government's decision to replace disability living allowance with a new benefit, personal independence payment, with tighter eligibility criteria, and to limit eligibility for employment and support allowance to a year for claimants in households with savings or working spouses, except where the claimant is too ill or disabled to work at all.

The study also found that families with children were being disproportionately affected by the cuts. Average incomes for families with children are due to fall by 4.2% from 2010-15 in real terms, compared with 0.9% for all households, when all changes - not just those to taxes and benefits - are taken into account.

Larger families and those with younger children will be particularly badly hit, the research found.

"Many families will be left struggling to understand why they have been singled out in this way and how this sits alongside the Government’s ambition for the UK to become a family friendly nation," said Family and Parenting Institute chief executive Katherine Rake.

Source: Communitycare © Reed Business Information Ltd (04/01/12)

A man with multiple sclerosis has begun a legal challenge against Sheffield Council over a rise in his care fees.

Michael Tooley, who has suffered from the illness since 1997, said his weekly contribution towards his care had increased from £115 to £345.

Mr Tooley, a barrister, said the rise was excessive and discriminatory.

Sheffield City Council said it had carried out a full public consultation before changes were made to its contribution fees earlier this year.

Mr Tooley, who works in Sheffield, said secondary progressive MS meant he relied on non-residential care to lead a "normal life" because he cannot walk, stand up or move his right arm.

"I receive from the council, my own budget that I spend on my own care, for things like people helping me to go out, accompany me on holiday, so I can live as much of a normal life as I can."

'Reflects national guidelines'
A solicitor working on behalf of Mr Tooley has written a letter to the council outlining his concerns.

Eddie Sherwood, director of care and support at the Labour-run council, said: "We cannot comment on any pending individual court case and this claim has been referred to our lawyers for consideration.

"Our lawyers are currently awaiting a reply from the complainant's lawyers in response to various points they have made.

"We feel we followed all due process around consultation, taking full account of the impact any changes would have on individuals, and have only asked people to contribute to the cost if they have the ability to pay, and this national guidelines"

In October, the council announced it was to make a 205% increase in the cost of about 200 people's weekly contributions as it looked to cut £15m from its social services budget.

Mr Tooley said: "I'm not expected to pay for my healthcare I receive or my children's education - why should I be expected to pay an excessive amount for the day-to-day care I require to carry on living normally?"

Source: BBC News © British Broadcasting Corporation 2011 (02/12/11)

GPs throughout the UK should be giving more support to carers who are aged over 60, a charity says.

The Princess Royal Trust for Carers says family doctors should offer older carers an annual health check, including screening for depression.

The charity says almost 70% of hundreds of older carers questioned in a survey said that their health was suffering because of their responsibilities.

Ministers admitted that more work needed to be done to help older carers.

More than 600 carers aged between 60 and 94 answered questions for a survey by the Princess Royal Trust.

Just over a third reported having cancelled an operation or treatment because of their caring responsibilities, while half said their health had got worse in the past year.

Crumbling spines

The charity's policy director, Moira Fraser, said: "Carers want to look after friends or family members - but often it's at the expense of their own health.

"We heard about people with crumbling spines, heart problems and cancer. Sometimes people's knees are so worn out they feel as though they can't walk at the end of each day.

"Others suffer from mental problems - such as stress and exhaustion. They worry about the future and have feelings of hopelessness."

She added: "One woman needed an ankle replaced, but she had to put off the operation because it would have meant being in plaster for three months.

"We hear positive words from the authorities. The important thing is for funding to make it through to a local level."

There are thought to be six million carers in the UK. Many of them are over retirement age.

The Princess Royal Trust for Carers wants to see the NHS and local authorities fund training for carers to help them lift other people safely.

Action plan

Professor Nigel Sparrow, a spokesman on carers' health for the Royal College of GPs, said: "We fully support the recommendations.

"We are in a very privileged position in general practice in that we have a registered list of patients so that we know both the patient and family, allowing us to support the needs of carers."

Ministers in England have published a four-year action plan - Recognised, Valued and Supported - to support carers' mental and physical health.

A Department of Health spokesman said: "Work is under way to address these concerns locally, but clearly more needs to be done to meet the needs of older carers.

"The Department has invested in a number of local sites exploring different ways of providing breaks for carers, and ways in which the NHS can better support carers with more flexible appointment times.

"An evaluation will be published later this year."

Source: BBC News © British Broadcasting Corporation 2011 (13/09/11)

A major revamp of adult social care law in England and Wales is needed to ensure fairer access to services, the Law Commission says.

The government advisory body said the current framework, covered by more than 40 laws, was "outdated and flawed".

Instead, it said there should be a single piece of legislation so people were clear about their rights.

The report is the first of two reviews ministers will use to reform social care in England in the coming years.

An independent commission has also been set up to look at how social care - which is currently means tested - should be funded.

It is due to report in July and will be followed by a white paper at the end of this year and legislation in 2012.

Wales is looking at its social care provision separately.

There is almost universal agreement that social care needs reforming, as councils struggle to meet rising demand because of the ageing population amid cuts in funding.

'Dog's breakfast'
 
Frances Patterson QC, the law commissioner leading the review, said she wanted existing laws and regulations "swept away" and replaced by a single adult social care statute.

She told BBC Radio 4's Today programme: "Our role is to produce a clear, consistent and comprehensive legal framework to reform the way adult social care is delivered across the country."

She said the Law Commission also wanted to introduce a code of practice which local authorities would be required to follow "unless there was good reason not to".

It would be down to individuals to enforce their rights through the courts if they felt their care was insufficient, she added.

The Law Commission report has been widely welcomed by charities, who say it provides a good blueprint for reform of the system.

Michelle Mitchell, of the charity Age UK, described the recommendations as a "one-off opportunity to replace this dog's breakfast with a clear, logical and consistent framework".

Social care law has developed "piecemeal" since the National Assistance Act in 1948, the Law Commission said. There are now over 40 separate laws and thousands of pages of guidance.

This has resulted in a system that is confusing for users, and at times contradictory, the report said.

For example, people with conditions that vary over time such as bi-polar disorder or dementia can, in theory, be excluded from care.

And while there is no law placing a duty on councils to support elderly people, they do have legal obligations to look after those with disabilities and mental health problems.

The recommendations call for a duty for councils to assess the needs of carers, and say the NHS and local government should work together more closely.

Care services minister Paul Burstow said the recommendations would be carefully looked at.

He added: "This report provides foundation for the most significant single reform of social care law in 60 years."

Source: BBC News © British Broadcasting Corporation 2011 (11/05/11)

The financial situation of more than a third of carers in the UK is so bad they do not want to wake up in the morning, research suggests.

A survey by Princess Royal Trust for Carers found 45% of those it questioned wanted to run away or felt depressed and that they could not cope.

Around 59% of the 800 carers surveyed said they had given up paid work to look after a sick or disabled relative.

More than half of those who still worked earned less than £10,000.

According to the report, Broke and Broken, 37% of carers asked said they were fearful of the future, 39% felt at risk of losing their home and 53% had borrowed money because of their caring role.

A further 15% said they were turning to alcohol or drugs to cope.

Taras, 51, told the researchers about caring for his disabled wife: "There have been occasions when my wife has found me crying.

"I often hide how I really feel from her because she has enough problems to deal with without me."

Robin, 71, said: "Caring is also expensive in terms of equipment - a car that can take a wheelchair, a converted bathroom, respite care expenses, a through-floor elevator - the list is endless and I have no income stream to help pay for it.

"It comes from savings that are not limitless. I have no future independent of being a carer."

Nervous breakdown
 
Karen, 42, cares for her husband who has neurofibromatosis and chronic arthritis.

She said since her husband became ill, they fell into poverty, she was declared bankrupt and lost a well-paid job and the couple lost their home.

"The stress of caring and the financial worries we've had to endure led me to have a nervous breakdown a few years ago.

"I never thought we'd be a couple who depended on the state for help. We can just about cover the bills, but we still struggle to pay for food and cover our rent."

Carole Cochrane, chief executive at the Princess Royal Trust for Carers, said: "The new coalition government has an opportunity to improve the lives of millions of carers.

"As part of their welfare reform they must ensure greater financial support for carers, and the comprehensive spending review must deliver the improved community support for carers to combine work and care, as pledged already by the government in June.

"Six million carers will judge the government by the decisions they make in the next two months."

The Department of Health and the Department for Work and Pensions issued a joint statement about their plans to ensure carers get the support they need.

"We are going to 'refresh' the Carers Strategy and, before the end of this year, we will set out how the government plans to work in partnership with carers, local authorities, the NHS, employers, the voluntary sector and local communities to improve support for carers.

"The government knows urgent reform of the social care system is needed to ensure it is sustainable and fair. We're already pressing ahead with a commission on the funding of care and support which will report back, within a year."

Any overhaul of the benefits systems would also "carefully consider" the needs of carers, they said.

Source: BBC News © British Broadcasting Corporation 2010 (27/09/10)

They claim the society's decision to close care centres was made behind closed doors

Members of the MS Society are calling for the charity to reverse the decision to close its four respite care centres, claiming the plans were made "behind closed doors".

The society announced last month that it would withdraw support for its residential centres in York, Leamington Spa, Surrey and East Lothian, putting 380 jobs at risk. It plans to redirect £2.1m away from the centres and into providing more personalised support for people with MS.

But members of the charity have tabled resolutions for its annual general meeting in September that call on trustees to reverse the decision and criticise the way it was made.

One member, Janice Cook, says in a statement to support her resolution: "The lack of openness and transparency in this decision-making process is despicable on every level and appears to signal an intolerable sea change in the society."

A separate resolution calls for the Leamington Spa home to remain open and says: "The trustee decision to no longer provide residential respite care should be reversed until detailed work has been completed on individual impact and more effective, transparent consultation has taken place."

Cook said the decision had been made "behind closed doors" and some members were "disgusted by the way the decision has been made".

A spokeswoman for the charity said: "The MS Society has been open about the respite care review. Centre staff were informed and regularly updated through staff meetings, manager updates and staff newsletters. MS Society members were regularly kept updated through our various publications, and open meetings were held across the country."

Source: Third sector © Third Sector 2010 (20/07/10)

Health Secretary Nicola Sturgeon has been accused of showing a lack of interest in the closure of Scotland`s only multiple sclerosis (MS) residential respite care centre.

Labour leader Iain Gray hit out after claiming Ms Sturgeon refused to meet him to discuss the fate of Leuchie House near North Berwick.

The centre will close within five months unless a new service provider can be found and Mr Gray, MSP for East Lothian, is backing local efforts to retain the facility, which is operated by the MS Society.

Officials from the group announced it will close its residential centres following a year-long respite care review which showed overwhelming support for greater choice and holiday-style breaks.

Mr Gray said he was snubbed by Ms Sturgeon after seeking a meeting with her to discuss ways of preventing the closure of Leuchie House.

He said: "I am very disappointed that the Health Secretary is not prepared to engage with me or any of the campaigners to keep Leuchie House open."

The Labour leader said Ms Sturgeon saw the work carried out at Leuchie House when she visited it in October 2008.

He said: "I realise that Leuchie House is not an NHS service, but it saves the NHS a great deal of money and it would have been very helpful for the Cabinet Secretary to add her weight to the campaign to keep it open."

A Scottish Government spokeswoman said: "The MS Society is best placed to understand the respite care needs of people with the condition and the decision about the future of Leuchie House is a matter entirely for them.

"The Scottish Government recognises the valuable contribution of the MS Society in caring for and supporting people with MS in Scotland, and the importance of respite care for people living with progressive conditions and their families."

Source: The Press Association  © 2010 The Press Association (16/07/10)

High-flying finance director Trevor Callaway was diagnosed with multiple sclerosis in 1992. Within three years, he had to give up his job as the illness ravaged his body.

His devoted wife, Jeanette, has been providing him with constant care and, together, the couple from North Berwick have faced Trevor's condition with courage and dignity.

But now they are fearful for the future after plans were announced to remove one of their main sources of support.

For the past 40 years, Leuchie House, in their East Lothian town, has been providing respite care for people with MS from across Scotland.

As the only facility of its kind in the country, it has developed a reputation among thousands of users for being a haven for sufferers - and their carers. But the centre faces closure after the Multiple Sclerosis Society announced plans to divert respite care funds.

Trevor, 61, said: "Leuchie House is the only holiday I can get. I like the social interaction there, and I don't want to be stuck in a nursing home instead.

"We all have a good time at Leuchie. The staff are wonderful, you make friends, and you can talk about things there other than MS.

"They also give you counselling, and I don't know where I'd get the expert physiotherapy they offer there either."

Jeanette, 63, said: "We've been using Leuchie two or three times a year for residential care, and we've been using the day respite service every week since it opened in October 2008.

"We go on a Thursday most weeks, and it's a real saving grace as it gives me a few hours to catch up on the normal things, such as doing the shopping.

"The longer stays are vital, too, as they allow me to catch up on some sleep, and also give us a chance just to get a break from each other."

The MS Society in London took the decision to withdraw funding from the centre after carrying out a survey that drew responses from 1600 MS sufferers.

The survey showed a preference for more individualised care and holiday-style breaks. But those who use Leuchie House, such as Oonagh and Paul Kelly from Prestonpans, point out that such breaks are often unsuitable for those with more severe forms of the condition.

Former bank worker Oonagh, 68, has had MS for 22 years.

She said: "When you go to Leuchie House, you know that your every need is going to be cared for and the staff are absolutely marvellous.

"Both the carers and the qualified nurses are great, and it would be a real shame if they were to lose their jobs."

Husband Paul, 68, added: "The results of the survey were that 64 per cent of people with MS would like holidays in hotels and things like that. But then there's the 36 per cent who can't, and who need these facilities.

"Oonagh would love to go on a cruise, but she can't because of all the restrictions involved."

Edinburgh couple Doreen and Mervyn Graham face similar anguish if Leuchie House closes its doors.

Doreen, 67, was diagnosed with MS in 1987 and stays at Leuchie House every three months.

She said: "It's a very enjoyable place to go as you're treated like guests rather than like patients.

"There are a lot of things we do there such as theatre nights, cinema trips and day trips.

"There's a beautician, a hairdresser, and we also get physiotherapy every day."

Mervyn, 69, added: "The important thing is that you know she's in good hands.

"I can go up north and visit a few friends, I can go for a few pints, I've got the freedom to do what I want and I'm able to relax. But if Leuchie closes, it leaves us high and dry."

Leuchie House is owned by Sir Hew Hamilton-Dalrymple, a former Lord Lieutenant of East Lothian, who helped MS Society founder Sir Richard Cave launch the centre in 1970. He leases the site for a penny a year.

He said: "I'm sad and disappointed at this decision as there are three lots of people who suffer.

"Of course, those with MS themselves suffer, and that's the main concern.

"Secondly, Leuchie House is a major employer in this area, and the employees will suddenly be out of a job.

"Thirdly, you have all those who have raised money for Leuchie House. All that money is going to be lost, which is very sad.

"I would be delighted if some way could be found to keep Leuchie House open."

Scottish Labour leader Iain Gray is also keen that Leuchie House remains open. The centre lies within his constituency.

He said: "I've told service users and staff members that I will do everything I can to fight their corner and keep Leuchie House open."

But despite widespread opposition to the plans, the MS Society say they plan to move ahead with the funding changes which could see Leuchie House shut by the end of the year.

David McNiven, director of the MS Society Scotland, said: "Change is often challenging but we will ensure that more people with MS can have more individual choice and control over the care they receive.

"We have consistently made clear that the level of care and service delivered at Leuchie is excellent and so it was a very difficult decision for the Board of Trustees to make."

A place of respite

Scotland is home to 10,500 people with MS, the highest per capita incidence of the illness anywhere in the world.

Leuchie House employs about 70 people. Each year, it offers about 500 holidays for people with MS, who stay there for 12 nights at a time.

Source: Daily Record © 2010 Scottish Daily Record and Sunday Mail Ltd. (25/06/10)

Campaigners have started a petition calling on the MS Society to reverse its decision to stop providing respite care, which has put 380 staff at risk of redundancy.

The society’s board decided earlier this month to stop funding its four respite care centres, which provide short-term care for people with multiple sclerosis. They will all close by the end of 2011 unless they are taken over by alternative providers.

Campaigners who want the centres to stay open have set up a website that asks people to sign a petition calling on the charity to reverse its decision.

A total of about 1,300 people have joined four groups on social networking website Facebook asking the charity to save the centres.

Naomi Rainbow, campaign coordinator, whose mother uses one of the threatened centres, said: "The MS Society says it will offer alternatives such as holiday-style accommodation, but without care.

"This would be highly unsuitable for all guests who have needs high enough to be accommodated at the centres. They will therefore be left with nowhere to go, which will put an immense strain on them and their families."

A spokeswoman for the MS Society said the charity would not be reversing its decision.

"Of course we have sympathy with people who are feeling upset, but whatever the outcome is, if we sell on to another care provider we will fully support people and make sure they get the care provision they need," she said.

Source: Third Sector © Third Sector 2010 (25/06/10)

Nearly 400 employees at the MS Society could lose their jobs after its trustees decided to axe the charity's respite care provision.

The decision leaves about 380 staff at four short-term residential respite care centres facing redundancy unless other providers take them over.

The charity is looking for organisations to take over its three centres in England, which are in York, Leamington Spa and Horley in Surrey, and one in East Lothian, Scotland.

The Scottish centre, which the society does not own, will close by the end of 2010 unless another organisation comes forward to take it over. The English centres will shut by the end of 2011 if no alternative providers are found.

The trustees decided to move towards a more personalised service after a year-long review of respite care.

A total of 1,637 people with MS and carers responded to a survey and the charity held 16 focus groups with 85 people. The consultation found people wanted more individualised services, more choice and control, and holiday-style breaks.

In 2008, 1,385 people with MS and 51 carers used the 96-bed service, on which the charity spends £2.7m each year.

One employee, who asked not to be named, said the mood among staff was "desperate". She said staff had no idea the review could lead to centre closures and felt they had "no chance to respond in any meaningful way".

A spokeswoman for the MS Society said the review had been transparent and staff were advised and updated on its progress and outcome.

"Respite care is changing," she said. "As personalisation moves higher up the government's agenda, we need to be in the best position possible to help guide people through that process."

Source: Third Sector © Third Sector 2010 (22/06/10)

Eighty per cent of people in Northern Ireland looking after an ill, frail or disabled loved one do not have a life outside of their caring role, new research has suggested.

The survey was carried out by Carers Week, which is made up of several different charities.

The results showed that huge numbers of carers are left isolated and lonely, missing out on opportunities that the rest of the population takes for granted.

The results indicated that 79% of people have been forced to give up leisure activities since becoming a carer.

The majority of those surveyed said they can no longer rely on relatives for support either, as these relationships have suffered as a result of caring.

Pressure
 
Some carers said they feel marginalised and invisible.

The survey found that many carers felt unable to socialise, to have romantic relationships, or even to consider having children due to the emotional, mental, physical, and financial burden of their role.

Three quarters of carers surveyed said they are worse off financially, while 57% said they had to give up work.

Charities estimate that careers save the UK economy around £87bn annually by relieving pressure on health and social services.

But they argue that carers are not being supported in the role that they play for their communities and society.

Almost all carers questioned in the survey agreed a life of their own would be achievable if they received breaks, a decent income and were given support in times of crisis.

Carers Week is organised by 7 national charities: Carers UK, Counsel and Care, Crossroads Care, Help the Hospices, Macmillan Cancer Support, Parkinson's UK and The Princess Royal Trust for Carers.

Source: BBC News © British Broadcasting Corporation 2010 (16/06/10)

Commission set up to examine the funding of long-term care will report within a year.

Ministers today pledged to urgently overhaul Britain's "unsustainable" social care system and tackle a growing problem which the Labour government did little to address during its time in office.

An independent commission is being set up to examine the funding of long-term care and will report within a year. Its job will be to devise a plan for a new system of paying for the personal care services which are needed because of Britain's increasingly elderly population.

In a move which was widely welcomed by organisations representing older people, the coalition said that finding a new way of meeting the escalating costs of care was one of its main priorities.

"Urgent reform of the social care system is at the top of our agenda", said Paul Burstow, the care service minister and Lib Dem MP. "The current system is unsustainable – it cannot go on as it is. Our first step is to establish an independent commission.

"The Commission on Long Term care will be tasked with delivering a sustainable settlement, which is a fair partnership between the state and the individual," added Burstow. That remark suggests that taxpayers will have to pay at least some of the cost of whatever new system ultimately emerges, rather than the Government footing the entire bill. That is what previous studies, such as the 2005 one for the King's Fund health think-tank by ex-government adviser Sir Derek Wanless, have recommended.

The charity Counsel & Care heralded the move as "a unique opportunity to co-ordinate sweeping reform of the care system and to propose ambitious changes that can last through future parliaments. Older people are desperate for a decision now on the future funding of care. Universal agreement has already been reached on the state of the current care system: it is unfair, underfunded and unsustainable," said Stephen Burke, its chief executive, who warned that the situation would get worse due to increasing demands from senior citizens and pressure on budgets. Once agreement on a new funding model had been reached ministers should set out a clear timetable of when changes would be made, he added.

Michelle Mitchell, the charity director of Age UK, said: "The current care system is starved of funding, too few people receive services and the quality of care can be scandalous, so we urgently need to find new ways to improve quality and spreead the cost of care." Professor Chris Ham, chief executive of the King's Fund, said the commission "is a positive signal that social care reform will be among the coalition government's priorities. It is now more than a decade since the Royal Commission established by the last government reported. The challenge for the new commission is to set out a comprehensive blueprint for reform that commands support across the political spectrum". Legislation should be included in next year's Queen's Speech, Ham added.

Ministers also announced plans to better integrate health and social care, increase direct payments for carers and extend personal budgets to older people and the disabled.

Source: guardian.co.uk © Guardian News and Media Limited 2010 (24/05/10)

Millions of pounds intended to fund respite breaks for voluntary carers in England has been spent on other areas of the NHS, according to two charities.

The government announced in 2008 that it was doubling money set aside to allow long-term carers some time off - £50m this year and £100m next year.

The Crossroads Care and Princess Royal Trust for Carers say only 23% of this year's cash is being spent on carers.

NHS Trust representatives say money was moved to best meet local needs.

The two charities say the problem is that the money was never ring-fenced by the government and simply added to existing health budgets.

Some trusts have no idea how much money they received towards respite breaks, the charities claim.

'Different priorities'

Gordon Conochie, of the Princess Royal Trust for Carers, accused primary care trusts of failing to respond to local needs because of a lack of "transparency and accountability".

"Primary care trusts aren't telling local people what they're using the money for, they're not actually consulting with carers' organisations or carers locally," he said.

"And in our report we found a quarter of them hadn't even spoken to a local authority about actually publishing a joint plan with them."

The charities based their analysis on responses to Freedom of Information requests from 100 primary care trusts.

David Stout, director of the Primary Care Trust Network, said trusts had planned to meet carers' needs but were also faced with "many, many different priorities".

"So inevitably there's a need to meet needs as best you can in your local area."

Source: BBC News © British Broadcasting Corporation 2010 (08/03/10)

The wife of a Multiple Sclerosis sufferer has set up a special group for partner and carers of people with the disease.

Sash Bazley's husband Andy, 47, was diagnosed with the debilitating disease affecting the central nervous system three years ago.

And the couple, who have two children and live on Roydon Grove off Boultham Park Road, Lincoln, have since had to make changes to their everyday lives including Mr Bazley giving up his work as a stage manager and theatrical carpenter as he was no longer safe to work in a workshop.

And while Mrs Bazley, 41, says that her husband always makes the best of a situation, she has experienced times when she has wanted to speak to somebody in a similar position.

"I think it's a case of the more we look after ourselves the better placed we are to meet others needs," said Mrs Bazley who works part-time as a teaching assistant.

"And I think carers need a forum to talk about different things affecting them that they don't want to burden their partner or the family with.

"MS is such an unpredictable disease It's about sharing knowledge and experiences with people."

Mrs Bazley said the new group, which meets monthly, provides a very different service to that of the Lincoln branch of the MS Society which has more than 100 members.

While the MS Society excels in providing information to patients and carers as well as equipment and practical help, Mrs Bazley said the new group is purely for carers so that they can express themselves and their concerns freely.

She has been supported by MS nurse specialist at Lincoln County Hospital, Shannon Gaughan, who will attend the monthly group as well as Maureen Patten, the manager of the MS Therapy Centre in Outer Circle Drive, Lincoln.

The group meets at 7.30pm on the first Wednesday of the month at Swanholme Vintage Inn in Doddington Road, Lincoln.

For further details ring Mrs Bazley on (01522) 883108.

Source: thisislincolnshire.co.uk (12/01/10)

The NHS is to be given far greater responsibility for social care under plans expected to be announced by the government in coming days, HSJ understands.

In what is claimed by Department of Health sources to be the most radical change to the NHS in decades, a paper to be published by health secretary Andy Burnham on the future “vision” for health policy is thought to include proposals to give the health service much greater involvement in social care.

The vision, considered a trailer for Labour’s manifesto commitments on health policy, is expected to emphasise the need for much closer integration of acute services, community services and social care.

It comes ahead of the social care white paper in the new year, in which options will include merging of commissioning functions across health and social care. Ministers are understood to have instructed officials to work up different options for the ways in which primary care trusts and local authorities can work much more closely together.

The possibility of pooling budgets and joint commissioning of services have already been discussed. The government is also considering handing control of and funding for social care to primary care trusts. This would remove the incentive for health and social care to “shunt” costs from the NHS to local government and vice versa.

Social care is currently provided by local authorities, the majority of which are now Conservative controlled. A move towards greater control of social care by the NHS has been described to HSJ by an NHS source as one way to “rip the guts out of” Tory-controlled councils.

Since becoming health secretary, Mr Burnham has repeatedly said he wants to make the future of social care one of the top three issues in the general election campaign. A long-awaited green paper on the future of social care - and how to fund it in the face of the demographic time bomb caused by the ageing population - was published at the start of the summer.

Both Mr Burnham and the prime minister Gordon Brown have described their intention to set up a National Care Service to run alongside the much-loved NHS.

In a speech to NHS medical directors two weeks ago, NHS chief executive David Nicholson said: “We have got to think about how local government manages provision and whether we can integrate directly health and social care horizontally across the system.”

He said: “One of the bits of evidence we do know is that the real productivity gains, the real quality and productivity gains in the future, are at the interface of secondary and primary care, at the interface between NHS and social care, at the interface between empowered patient and the service.”

Mr Nicholson cited mental health trusts as a good model for the provision of integrated services. Several mental health trusts already provide both mental health services and social care through one organisation.

He said: “We’ve got a whole set of really good models for the integration of whole systems working and that’s our mental health trusts. Many of our mental health trusts run complete systems and do it fantastically effectively.

“And over the last few years have dramatically shifted the balance between hospital and community services. It seems to me that’s a really powerful model that we should think about much more seriously for the future.”

The Department of Health said at the time that further details on the implications of Mr Nicholson’s comments would not be available until after the pre-Budget report, which will be published tomorrow.

In addition to Mr Burnham’s vision for the future of the health service, the Department of Health is expected to publish its annual “operating framework”, setting out its expectations for the NHS in 2010-11, within the next two weeks.

Source: Health Service Journal  © 2002-2009 Emap Ltd.(09/12/09)

The National Health Service in England is failing to invest in sorely needed services for carers, campaigners say.

Data uncovered by two charities suggested just £10m of the extra £50m earmarked for support services was being spent this year.

The money was promised by the government to help fund services such as respite care and counselling.

The Princess Royal Trust for Carers and Crossroads Care said the results of the poll of 130 NHS trusts were alarming.

There are 6m carers in the country, 1.5m of whom spend more than 50 hours a week looking after relatives.

Ministers last year acknowledged the role they were playing when they promised an extra £150m for support services.

But instead of ring-fencing the money, the government merely asked primary care trusts to set aside £50m this financial year and £100m during 2010-11 from the annual increases in the health budget.

To see whether the funds were getting through to the frontline, the two charities, which provide support services to carers, requested spending data under the Freedom of Information Act.

They received responses from 130 of the 152 trusts in England showing that 80% of the funds were not being or were not due to be spent this year.

Carole Cochrane, chief executive at The Princess Royal Trust for Carers, said: "We are alarmed and disappointed at these research findings.

"Once again, the recognition of carers and their significant contribution is not seen as a priority."

And Anne Roberts, chief executive at Crossroads Care, added: "Carers need support.

"Without a break they can often reach crisis point, where their own physical and mental health deteriorates.

"When carers reach this point, trusts will have to provide additional support at additional cost, so failure to provide carers' breaks is short-sighted."

Liberal Democrat health spokesman Norman Lamb said: "The government should be ashamed of its failure to provide the help they promised to carers.

"Many people across the country are in desperate need of this support."

Source: BBC News © British Broadcasting Corporation 2009 (13/10/09)

Unpaid carers looking after loved ones are desperately in need of some free time to recuperate, according to new research.

Figures released this week revealed two thirds of carers in the east of England are at breaking point because of the pressures they are under.

Shockingly, 60 per cent of carers surveyed had not had a break for a year, and of those, more than a third had never had time off.

Sandra Amis, from Jaywick, who has cared for her wheelchair-bound husband, Michael, for 26 years, said having a little free time was hugely important for those who gave much of their lives to others.

The 65-year-old helps MS sufferer Michael, 69, with every aspect of his daily life, from 7am until he goes to bed at about 9pm.

She has looked after him full-time since 1983, when he became confined to a wheelchair. She was also pregnant at the time.

Her exhausting daily routine is broken up by Michael’s six visits a year to Brambles, a respite care centre in Surrey run by the MS Society, which she said provided her with a treasured chance to relax.

She said: “He goes there about six times a year for a week at a time, just for me to get a break.

“It gives me a chance to relax, not having to do everything for him, and a chance maybe to lie in.

“I can go out, because when he’s at home, I can’t leave him alone for too long.

“I keep a mobile phone on in case he needs me. He has called me when I was in the middle of shopping, and I have had to leave it all and go straight home.”

Michael’s visits to Brambles are partly funded by the Government.

Sandra said there needs to be more awareness of carers’ work, and more opportunities for them to find out about respite care options.

She said: “I am one of the lucky ones. I don’t know if a lot of people know they can apply for this type of thing. It is very difficult. A lot of people do not like to ask for things.”

The research also revealed the systems supposed to assist carers in getting respite help were one of the biggest hurdles they had to face, leaving them stressed and exasperated.

Lack of sleep, financial worries, and the deterioration of the person they were looking after were also huge factors taking their toll.

Emily Holzhausen, the director of policy and public affairs for Carers UK, said carers often spend so much time looking after someone their own health deteriorates.

She said: “There are not enough quality services for carers.

“A lot of people do not get enough of a break. They certainly do not get enough support to do some of the basic things people take for granted, such as popping out to the shops, getting their hair cut, or just going for a walk.

“When people do not have that, the stresses and strains build up to breaking point.”

Awareness of the work of carers is improving, she said, but the amount of work they do is often underestimated by those who have not seen how much the job involves.

Mrs Holzhausen wants to see a culture change, with more services offered to take the strain off carers, and better information available.

“It is about cutting bureaucracy”, she said.

Source: Clacton Gazette © Copyright 2001-2009 Newsquest Media Group (16/06/09)
 

A one-stop information and advice service for the unsung army of carers who look after ill, frail or disabled friends and relatives was officially launched today by Care Services Minister Phil Hope.

The Carers Direct hotline will make England's 5 million carers' lives easier and reduce the time and stress of searching out essential advice.

Funded by £2.8 million a year, Carers Direct includes:

• Details of support available, including assessments, benefits, direct payments, individual budgets and time off.
• Help to maintain, leave or return to employment
• Help in education or training.
• Advice on how carers maintain or improve their social and emotional well-being and their physical and mental health.
• Access to health and social care for the person being cared for.
• How to access information about, and support from, health and social care services for the person being cared for.

The launch comes on the one-year anniversary of the publication of the Government's Carers Strategy. Since last year carers are being given more planned breaks and better information about their rights and the support available to them. Later this year, they will also receive more support to get or return to work.

Speaking at the launch of Carers Direct in Islington, Care Services Minister Phil Hope said:

"I know that carers' lives are often made unnecessarily difficult if they have to struggle to find the information, advice and support they need. I hope Carers Direct will put this right.

"I have huge respect and admiration for the 5 million carers in England, who do fantastic work every day. The Carers Strategy has already gone a long way to better support carers, but there is still a lot of work to do."

Jonathan Shaw, Minister for Disabled People, at the event said:

"The Government wants to make sure carers get the help and support they need to overcome their barriers to work, fulfil their potential and build a better life for themselves and their families.

"The Carers Direct helpline will work hand in hand with our own information on the DirectGov website to ensure carers are given the help and support they need."

Carers Direct is complemented by Caring with Confidence ( www.caringwithconfidence.net) a training course available to carers face-to-face, online and by distance learning. Caring with Confidence inform carers of their rights, the services available to them and networks which might support them. The Department of Health is investing around £4.6 million a year into Caring with Confidence.

Other initiatives from the Carers Strategy being developed include:

• Piloting a 'return-to-work' training entitlement of up to £500 for those who undertake more than five years of caring responsibilities, helping them to get the skills they need to get back into the labour market;
• Enabling Jobcentre Plus to provide a range of new services to carers, such as better training for advisors on awareness of carers needs and displaying more information on vacancies offering flexible working;
• Demonstrator sites to explore ways that local authorities and PCTs can help carers better by:
• Providing more breaks for carers
• Offering regular physical and mental health and wellbeing checks for carers
• Supporting carers more effectively through the NHS, for example, by ensuring that
• The NHS considers carers' needs when booking and holding GP and hospital appointments
• Helping local areas develop better support around families to protect young carers from excessive and harmful caring roles, and strengthening awareness and support for young carers across schools and among GPs.

Source: Department of Health (12/06/09)

The pressure of being a carer has forced three out of four of them to "breaking point", according to a poll.

The survey of 1,941 unpaid carers found 74% said they had been stretched to their limits by caring for someone.

Frustration with the bureaucracy of accessing NHS care and benefits was the most common reason they cited as forcing them to breaking point.

The study was carried out by a partnership of 10 UK care charities ahead of this week's Carers Week.

Learning difficulties

The poll also found the burden of the role was so great that some people have had breakdowns and others attempted suicide.

One carer, who only gave her name as Michelle, looks after her 19-year-old son who has autism, epilepsy and learning difficulties.

She says she has struggled for years to receive basic support from her local social services and housing department.

"The stress and difficulty of caring with no support has made me feel suicidal and only knowing no-one would care for my son made me not carry this through," she said.

A separate YouGov survey of 2,000 people found the public rates carers alongside the emergency services for their contribution to society.

Some 86% said carers made a valuable contribution to society, behind only nurses (91%) and firefighters (90%).

The poll also found 76% of the public believed the Carer's Allowance of £53.10 per-week was an unreasonable amount to support carers who are unable to work because of their responsibilities.

Former England footballer Sir Geoff Hurst said there was too little recognition of the indispensible work that they do.

"Those who care for family and friends mostly do so under the radar, without pay or acknowledgement, and deserve to be recognised for their dedication to the people they care for, not just during Carers Week but for all the weeks of the year," he said.

"Carers face physical and mental challenges every day and should be more visibly supported and appreciated for the generous and loving hard work that they do."

Source: BBC News © British Broadcasting Corporation 2009 (08/06/09)

Funding for specialist respite care for patients with multiple sclerosis in Scotland is being cut back, leaving many having to find the money themselves, The Scotsman has learned.

With the economic downturn putting increasing pressure on local authority budgets, carers say a postcode lottery of respite provision is emerging.

This means that MS patients at Leuchie House – the only specialist MS respite home for people in Scotland and the north of England – face a choice between paying for breaks themselves or going into cheaper care in nursing homes.

But experts said that such homes – often caring for the very elderly and those with dementia – were not always appropriate for people with MS, who come from all age groups.

The Scottish Government says it has agreed with local authorities to increase respite care funding over three years.

Leuchie House, near North Berwick, is funded by £800,000 a year from the MS Society Scotland.

But the high level of nursing required by those using the centre means a 12-day break still costs between £1,100 and £1,700 – up to £140 a day.

This bill is picked up by the patient, their local authority or grants from charity.

Mairi O'Keefe, manager of Leuchie House, said it was a "postcode lottery" whether patients received funding from their local council.

"It depends on what local authority you live in and how much respite they are willing to fund," she said.

Ms O'Keefe said that some councils would provide funding up to the cost of a nursing-home place, which is cheaper than Leuchie House because they offer a less specialist service. She said in some cases people with MS were forced to accept respite in nursing homes or none at all.

"If people with MS cannot come to Leuchie House, they may be placed in local nursing homes, often with people much older than themselves with conditions such as dementia.

"This kind of care is cheaper, but it is so depressing for the younger guests. They are often just stuck inside. It can make them withdrawn if they have no-one to speak to."

Rachel Benson, bookings administrator at Leuchie House, said:

"People with MS feel they have to take the nursing home respite if it is offered, to give their family a break. But it can be a devastating experience, especially for younger people."

Shona Robison, the Scottish public health minister, said action was under way with Cosla – the umbrella body for Scotland's local authorities – to increase access to respite care.

"We have agreed with Cosla that there should be extra respite provision and an extra 10,000 respite weeks will be delivered by 2010-11," she said. "We have put in an additional £4 million to ensure that that commitment is delivered."

A spokesman for Cosla said: "Cosla and the Scottish Government have agreed to deliver additional respite weeks over the course of the next three years."

Case Study: The road to freedom

Elissa Hay was diagnosed with multiple sclerosis ten years ago. Her condition has gradually deteriorated and she now has to use a wheelchair.

At Leuchie House, the MS Society Scotland's respite care home, the 45-year-old can enjoy days out and activities which are denied to her when she is at home.

"I have problems walking," said Ms Hay. "I have become a couch potato. I could sit and watch the telly all day."

Ms Hay, from Edinburgh, said her condition had gone downhill in the last ten years, leaving her almost housebound.

But Leuchie House has given her some of her freedom back.

"They are wonderful. They do everything for you," she said.

Scotland is thought to have the highest rate of MS in the world, with 10,500 people diagnosed with the condition.

Symptoms vary from person to person and may include fatigue, problems with balance and walking and stiffness and spasms.

Source: The Scotsman © 2009 Johnston Press Digital Publishing (01/01/09)

A seven-year-old boy from Swansea who cares for his mother who has multiple sclerosis is to rub shoulders with some of the best known faces on TV.

William John from Loughor will pick up a Young Carer award at the Woman's Own Children of Courage Awards in London.

William's mother Wendy, who separated from his father when he was two, said she could not get by without him.

As well as meeting stars from Strictly Come Dancing and The X-Factor William will also visit 10 Downing Street.

His mother was diagnosed with MS 10 years ago.

She said: "All the things I can no longer do, William does - he's always there making my life easier. He has been incredible."

She has trouble getting out of bed, dressing and carrying things - all jobs William has taken.

His mother said he was constantly striving to help, even when it meant missing out on things other boys his age enjoy, such as rugby practice.

'Frightening'

"I'm always falling over which must be very frightening for William but he takes it in his stride and helps me get up," she added.

"One day I didn't wake up at all - my body had shut down from exhaustion. Despite being terrified, he phoned his nan and stayed calm until help arrived.

"If it wasn't for William I might not be here today. I honestly don't think I could live without him."

Williams is one of 10 winners from all over the UK to be recognised at the awards, now in its 35th year.

The magazine's editor, Karen Livermore, said: "All our winners have shown tremendous courage and huge determination and we're delighted to give them the recognition they truly deserve."

Source: BBC News © MMVIII (10/12/08)

A review of the social care system in England has added weight to calls for an entire revamp of the system.

The Commission for Social Care Inspection was asked by ministers to look into what has been dubbed the rationing of social services.

Councils are increasingly only offering support to those with the most acute needs. The watchdog said it was unfair and consistent standards were needed.

Ministers will publish plans for social care reform early next year.

Public and professionals alike have been calling for this as the system in England is struggling to cope with the rising demand.

Councils have responded by starting to restrict access to services such as home care, day service and respite care.

On last count, two thirds of local authorities only offered this support to those with substantial needs, which includes people needing round-the-clock help.

Experts predict that unless the system is changed or extra money pumped in no council will be helping out those with low or moderate level needs within a few years.

The commission said the way councils were using eligibility criteria was "unfair" and "bewildering" to people, while at the same time pointing out funding was inadequate.

The report acknowledged the government was planning a revamp social care and called for the future system to have clear and consistent processes.

Struggled

Guidelines do currently exist about the application of eligibility criteria, but these are voluntary.

The watchdog also said it was important people in need were given a thorough explanation of the social care system on first contact as many struggled to understand what support was available.

Commission chairman Dame Denise Platt said: "While most people accept that not everything can be provided by the state, they want a fairer and clearer system."

Lizzie McLennan, of Help the Aged, added a revamp was urgently needed.

"This report confirms what we have known for some time – the social care system is confusing, scary and failing to meet people's needs."

The Department of Health is planning to publish a green paper on social care next year.

One of the systems understood to be under consideration is a form of co-payments whereby the state guarantees a minimum level of care which could then be topped up by the individual.

Social services is currently means-tested in England, as it is in Wales and Northern Ireland. Scotland has its own system where personal care is free.

Care services minister Phil Hope said: "This report makes a valuable contribution on how to make the system of social care funding fairer and more transparent."

But Martin Green, chief executive of English Community Care Association, said: "We cannot wait for the green paper.

"We need action now and if necessary some transitional approaches."

Source: BBC News © BBC 2008 (22/10/08)

Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care.

The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables.

Method: Consecutive MS clinic attendees were assessed with the 26 - item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness.

Results: The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P <0.01), but higher QOL than the patients.

When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains.

Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role.

Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL.

Conclusion: Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education.

In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.

Source: 7th Space Interactive © 2008 7thSpace Interactive (08/10/08)

The government must give more money to help Britain's six million unpaid carers, MPs have said.

The Commons work and pensions committee said people who looked after friends and relatives saved the taxpayer £87bn.

It recommended income replacement for those unable to work because of their commitments, and compensation for costs incurred during "intensive" caring.

The Carer's Allowance is currently £50.55 a week. Ministers said they were working to give carers more "balance".

'Disappointed'

In its report - Valuing and Supporting Carers - the committee said more state help was of "critical importance".

It recommended income replacement for carers who were only able to work part-time.

The MPs said they were "disappointed" the government had not directly addressed financial help for carers in its Carers Strategy launched earlier this year, and that the group was identified as a long-term priority only from 2011.

Carers struggled to stay in work and often suffered "opportunity penalties", finding their vocational skills became rusty and out of date, they said.

The committee's chairman, Labour MP Terry Rooney, said: "Caring matters deeply to individuals, families and society in general.

"Sustaining the ability of carers to provide the care and support they give to others is of critical importance."

'Matter of urgency'

Citizens Advice welfare policy officer Vicky Pearlman, who gave evidence to the committee, agreed the system was outdated and needed to be overhauled.

She said: "The current system is enormously complicated, and even Department for Work and Pensions staff struggle to correctly identify, and clearly explain, the benefits that carers and their families are entitled to.

"It is crucial that the government takes action to boost carers' incomes as a matter of urgency."

Imelda Redmond, chief executive of campaign group Carers UK, said the existing Carer's Allowance was "insultingly low".

"The two-tier benefit recommended by the committee would be a major improvement to the current system," she said.

"Carers need a separate benefit which recognises that they are not unemployed but are making an important contribution to society."

'Valuable contribution'

Anne McGuire, minister for disabled people, said: "We are working with employers to ensure that carers can have a better balance between their work and caring responsibilities.

"The government is committed to reviewing the care and support system as part of the longer-term welfare reform programme.

"We welcome this report, which is a valuable contribution to the debate. We will study the recommendations and respond to them in due course."

Prime Minister Gordon Brown has said carers' problems are "being listened to".

Earlier this year he told the BBC he would personally oversee government policy, which could see changes to the Carer's Allowance.

Source: BBC News © BBC 2008 (29/08/08)

The announcement, expected later today, is part of a 10-year drive to improve the lives of the UK's 6m carers.

According to the Department of Health an extra £150m will double the amount of respite time available over 2 years.

But charities are disappointed that improvements to carers' benefits across the UK have not yet been finalised.

It is almost 10 years since the Government's first Carers` Strategy introduced annual grants for local councils to provide support for carers.

Today's announcement of a new vision for the next 10 years is - according to the health minister, Ivan Lewis - supposed to reflect the changing needs of our times.

"In a society where an increasing number of us are caring for ageing parents or sick and disabled relatives, it is right that we recognise carers are at the heart of 21st century families and communities," he said.

"In the next decade elder care will be the new childcare and it is essential our policies properly meet the scale of the challenge.

Enhancing support

"Thousands of carers, irrespective of their roles or postcode, have told us they want a support system that is on their side, rather than a constant struggle and the right to a life of their own alongside their caring responsibilities."

According to the Department of Health the new strategy will also include £6 million to support professionals to ensure no child has their childhood stolen through taking on inappropriate caring responsibilities. And £38m will help carers who want to combine a job with their caring role.

A further £61m will be aimed at enhancing support to voluntary organisations and ensuring NHS and Social Care professionals focus on the specific emotional and health needs of carers; for example, there will be pilot schemes to look at ways of providing annual health checks for carers .

Carers' charities are pleased the government is tackling many of the challenges brought on by our ageing population , but one remains unresolved: carers' allowance at £50 a week is the lowest benefit of its kind in the UK.

Many carers of working age have to give up paid jobs and many already retired have just small incomes.

Imelda Redmond from Carers UK told BBC News: "There is a need to radically overhaul benefits for carers . The system is no longer fit for purpose."

Ministers say they want to improve carers` incomes, but any benefits reform has not yet been finalised. Until it is, many carers will give these plans only a cautious welcome.

Source BBC News © BBC 2008 (10/06/08)

The MS Society is to launch a new initiative that aims to reassure carers of people with multiple sclerosis (MS) that their duties will still be carried out in an emergency.

The free Carers Emergency Card gives 24-hour access to temporary cover for an unexpected situation and leaves the carers safe in the knowledge that their relative or friend will be looked after.

Whether it be the car breaking down while out shopping or maybe a medical or family emergency, many carers of people with MS worry that there may be a time when they will not be available to continue caring.

Jo Ridley, Carers Lead for the MS Society, said: "The MS Society Carers Emergency Card will now give carers the peace of mind that the person they care for will still be looked after if something untoward happens.

"This is a practical solution and will provide comfort to both the carer, and the person being cared for."

The Carers Emergency Card is being launched to coincide with Carers Week (9th to 15th June). It is free to register for the card and during registration the carer will be asked for the details of three trusted contacts to be called upon in an emergency.

When the number on the card is called, leading telecare provider Welbeing will phone the named contacts and arrange cover.

Jo added: "A Carers Emergency Card system exists in some parts of the country but there are still many areas where carers are left to fend for themselves.

"Carers who already use an emergency card say that it gives them valued reassurance. By introducing this card, the MS Society hopes to plug those gaps where no service exists."

For how to register contact Welbeing on Freephone 0800 085 8344.

Source: The MS Society (04/06/08)

• MS sufferer can't get round the clock care

• Public voice their concerns over growing problems facing the social work service

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 - 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

Source: Informa World © 2007 Informa plc (10/08/07)

Every afternoon, as 13-year-old Gemma Gingell’s friends head off to one of their parents’ houses to listen to music or do their homework, Gemma goes home alone. There she is greeted by her mother, and between them they shower her father, give him dinner and put him to bed. Gemma will take particular care to hold his cup steadily for him and check that his nose and eyes are dry.

Alan Gingell suffers from multiple sclerosis and is nearly blind and virtually house-bound. His illness affects not only his life, but that of his whole family – and most especially his daughter.

This week the Princess Royal Trust for Carers, a nationwide charity that helps carers of all ages, has called on the Government to set up an inquiry into the plight of young carers after an inquest last month into the death of Deanne Asamoah, 13, who had been caring for her ill mother and died after taking a morphine overdose.

The official figure for young carers (anyone under the age of 18) in Britain is 175,000. But the Princess Royal Trust says that this number is far too modest. It points to a 1996 Eurostat report that there are three million people under 18 who, though not classified as a “young carer” (because their tasks are shared with someone else), do care for parents. These include those who live with a parent with a disability, those who have a parent who suffers from substance misuse and those who have one or two parents with an alcohol problem.

Gemma’s mother, Jane, says that Alan’s symptoms began to show just after Gemma’s birth, yet ever since diagnosis in 1989 they have had to fight for treatment and help, and Gemma has paid the price.

“I hate to sound bitter, but social services know Gemma and I do everything for Alan and so they have just left us to get on with it. But it is not right for a 13-year-old to shower her father. Together we have looked after Alan for 13 years with no break.”

Gemma knows nothing else. Like many teenagers, she would love to go to Alton Towers and Legoland, but a family trip is an impossibility. Holidays have been courtesy of the Princess Royal Trust for Carers; Gemma first went away from home at 8, to Butlins – the youngest carer in a group that comprised mainly teenagers.

“It was daunting,” she admits. “But it was great to have a break. I was more resentful of caring for Dad when I was at primary school. I didn’t get bullied but I was classed as different. If Dad was in hospital I had to have a day off school and I was called a skiver. And I didn’t want him to come to parents’ evenings because he was in a wheel-chair and different from the other dads.”

Gemma admits that at first she did not like showering her father. She felt uncomfortable seeing him naked. Now, however, she is used to it. This is one aspect of caring that charities say should not happen. The Princess Royal Trust says that this really affects the parent-child relationship, and that much more needs to be done to relieve the burden on children like Gemma.

Alex Fox, the head of young carers development at the trust, says that many young carers have only one parent and no other support. Often the parent has alcohol or drug problems and the child hides his or her responsibilities from school and even friends.

“In most cases, young carers fall between the gaps in the system – they get help from neither adult nor child services until it is too late. Under the Government’s Fair Access to Care these children should get support – guidelines state that when adults are assessed for community care their parental and family responsibilities should be taken into account. But this rarely happens. Many disabled parents ask for help, but often they are told nothing can be done until it becomes a child protection issue, which means the children’s services will come into play. In reality, this means no help is given until after something goes dreadfully wrong, when they are labelled as failed parents, which is often not the case.”

Fox says that the Government’s approach and guidance is in the right vein, but it needs to be taken up by services on the ground. The Princess Royal Trust tried, but failed, to add an amendment to the Education and Inspections Bill last year requiring school governors to nominate a designated person in each school to help young carers.

“Often teachers are ignorant of child carers’ responsibilities, and when they continually miss school, class them as truants. These children then often fail in their education and are unable to get proper jobs,” says Fox.

Luckily this was not the experience of Becky Slater, who has spent the past seven years caring for her mother and her sister. Lynne Slater was given a diagnosis of multiple sclerosis when her younger daughter was 10. Her elder daughter, Nicola, has severe cerebral palsy. So all her life Becky has helped to look after her sister, and now her mother too. “I don’t really know anything else,” says Becky. “I always helped Mum with Nicola, sorting out her baths and meals. When Mum became disabled then I helped Dad with her too.”

Lynne Slater describes her daughter as a Godsend. But she admits that she finds it hard to accept that her 17-year-old has had to put her life on hold to care for the family.

Becky says there are times when she has found the burden of responsibility too heavy. It was particularly hard when she could not go out as much as her friends or chat with them after school. Now she is older, after preparing her mother and her sister for bed, she has more of a life. She is looking for a job with special needs children, but the hours still have to fit in with her family commitments.

Fox says that although most young carers take on these burdens out of love, they often have to cope with guilt and would not choose to spend their childhood playing the role of a parent. “Many young carers tell us that they feel guilty that they no longer want to care, especially when they become teenagers. Their sense of responsibility then competes with their increasing sense of independence. They want to lead their own lives yet feel guilty about these desires.

“Often, young carers just want access to a phone during the day. If they are worried about their parent’s drink or drug problems, they want to stay in contact. If they cannot do this they will not go to school.”

A spokesman for the Department for Education and Skills said: “Ideally no child would undertake such responsible roles. But we must acknowledge that some do, and some of these will do so by choice as families decide that it is the best thing for them. It is up to professionals to work with families and make careful judgments about what support is appropriate, based on the family’s individual circumstances.”

Source: The Times Online © Copyright Times Newspapers Ltd

The report, conducted by the Picker Insitute for the Department of Health, called for a single point of contact in every neighbourhood where those in need could access trained staff.

It warned that carers and people with diseases such as multiple sclerosis and diabetes were "left dangling" as calls went unanswered and they were shifted between organisations.

The institute's chief executive, Angela Coulter, said potential service users - played by a group of "mystery shoppers" - "were frequently pushed from person to person, or from organisation to organisation".

"They were often left dangling by calls that went unanswered," she added. "They encountered sheer brick walls."

While she acknowledged that some users "did have a good result" she argued that "too often the services supposed to help people in real need throw them back on their own resources".

"Patients, service users and carers are left standing at a crossroads in their lives with no signposts to information about the kinds of support they say are vital," she said.

Health minister Rosie Winterton pointed to government initiatives - such as "information prescriptions" which include details on their condition - aiming to help people navigate NHS resources.

"Dispensing good, clear information is as important as prescribing pills or performing operations," she said.

"We all want to be able to lay our hands on the right information and advice as quickly as possible and the Picker Institute's findings support this.

"We absolutely agree that information should be proactively given to people who use the NHS."

Source: Yahoo! News Copyright © 2007 Yahoo! Inc. All rights reserved.

A Lincolnshire County council report said it rushed through new fees last autumn, but it insists the new system is fairer.

Some people protested about the increases - which in some cases doubled - and the short notice period.

The policy was announced at the end of October last year - only four weeks before the changes went into effect.

Richard Van Der Fransen, who has multiple sclerosis, left the county and moved to Essex saying the charges were too high.

Too expensive

He said he could no longer afford to live in the county.

The council admitted it did not allow enough time for people to sort out their finances before the change came into effect.

The policy introduced new methods of financial assessment and entitlement, which resulted in increases for some people.

But council figures show that only 117 people out of 4,319 users pay the maximum amount - which is £120 per week.

The council said its policy protects people on low incomes and means that some people will pay no charge at all.

Mr van der Fransen, from North Somercotes, said he had been paying £41 a week for two home help visits a day.

But under the new charging scheme the cost rose to £120 a week which was beyond his means.

Carolyn Kus, assistant director for the council's adult social care, said: "The council recognises we need to look at how we implement things - and we may look at doing things differently.

"We need to reflect on this - and that is what we are doing."

Source: BBC News Copywrite BBC 2007

James McGee, 62, of Holbrook Vale, Melksham, whose wife Mary passed away in January after a long fight with her illness, had the red carpet rolled out for him and his two daughters before meeting Tony and Cherie Blair.

Mrs Blair wrote to the couple in August last year saying she would fight their case for them in her professional capacity as a human rights lawyer.

When Mrs McGee went into hospital after suffering heart failure later that year Mrs Blair sent her flowers and a note.

Mr McGee said: "It was a smashing day, just unbelievable. The president of Ghana was there when we arrived so they had the red carpet out.

"When we met Cherie and Tony, she told the staff to leave the red carpet down so we could all have our photos taken together outside the front door.

"When we went to go back in, Cherie even had to knock on the door because we had been locked out."

Mr McGee and his daughters Carolyn Knott and Alison McKeown spent an hour and a half in 10 Downing Street chatting to the Blairs and then going for a tour around the building.

Mr Blair told Mr McGee how Cherie had talked to him about their case and how sorry he was about his wife's death.

Mr McGee will be going to meet government officials in charge of benefits for carers later this year so he can continue to fight for the rights of people with long-term illnesses and their carers.

Source: Wiltshire and Chippenham Times Copyright 2001-2007 Newsquest Media Group

INTRODUCTION:
We studied the level of distress in caregivers of patients with recently diagnosed multiple sclerosis (MS), and their relation to clinical characteristics. 

METHODS:
Caregivers of patients with MS and Parkinson's disease completed measures of distress and quality of life. MS patients underwent neurological, neuropsychiatric and neuropsychological examinations. Multivariate regression analyses were used to explore the relationship between patient variables and caregiver distress.

RESULTS:
Caregivers of patients with MS experienced high levels of distress and reduced quality of life related to care giving. The level of distress was similar to that reported by elderly spouses of patients with long-standing Parkinson's disease. Psychiatric symptoms and cognitive impairment in patients with MS were associated with caregiver's distress and quality of life, even after controlling for level of disability (all p values <0.01). Patients' physical impairment was associated with caregiver distress, but not with caregiver quality of life.

CONCLUSION:
Caregivers of patients with MS experience high levels of distress and reduced quality of life. Psychiatric symptoms and cognitive impairment contributed significantly to caregiver distress, over and above the effect of disability due to neurological symptoms.

Source: PubMed

Mary McGee, 61, and her husband James, 62, of Holbrook Vale, Melksham, fought Wiltshire County Council for months to ensure she maintained respite care and home help.

Their fight was bolstered by Cherie Blair, who wrote to them in August under her professional name, Cherie Booth QC, saying she would fight their case for them.

In the end no cuts were made to Mrs McGee's care and the couple believed it was the support of Mrs Blair that helped them.

Yesterday, Mr McGee received a letter from Mrs Blair. In it, she said: "I was so sorry to hear of Mary's death, I know she was a very special lady. You are in my thoughts and prayers."

Mr McGee said: "That will be a real comfort to me and the family. Mary would have loved that because Cherie had taken the time to write to her."

Mrs Blair's secretary also wrote to him inviting him to come to 10 Downing Street.

Mrs McGee was taken ill on January 7 and rushed to the Royal United Hospital, in Bath. She died from pneumonia on Friday with her family at her bedside.

Mr McGee said worrying about whether his wife's care would be cut or if she would have to go into a home was very stressful at the time.

He said: "After Cherie got involved everything stopped - we never had any contact with a social worker again."

Mrs McGee was rushed to hospital with heart failure in September and while she was there Mrs Blair sent her flowers and a note.

The couple learned her care package would not be cut soon after she came out of hospital.

Mr McGee said: "In September I maintained it was the stress that made her ill - it was worrying about everything."

The couple's daughter, Alison McKeown, 40, said: "It was worrying to think that she might have had to move out into a home."

Since Mrs McGee died, the family have received phone calls and visits from many of the carers who looked after her and became very attached.

Their other daughter Carolyn Knott, 35, said: "She was such a gentle and nice person with genuine values."

Mrs McGee was born in November 1945 in Keevil and raised in Steeple Ashton. She was diagnosed with multiple sclerosis in 1986 and by 1993 was confined to a wheelchair. Her husband was her main carer throughout her illness.

Source: Wiltshire Times and Chippenham News © Copyright 2001-2007 Newsquest Media Group

Introduction

What impact does caring for a loved one with multiple sclerosis (MS) have on the MS CarePartner’s emotional health and physical wellbeing? In 2005, a group of researchers and clinicians from the Neurology Center of Fairfax, VA and the NARCOMS Registry joined forces to answer this question. For this study, approximately 12,000 registrants in the NARCOMS database were contacted. We asked them to request their CarePartners evaluate the impact of their role as a MS CarePartner on their stress levels, emotional well-being, and general physical health. This article will review the preliminary findings from this multi- disciplinary study.

Caregiving Stress in General

The role of caring for a physically-challenged loved one can be both rewarding, as well as a physically and emotionally hard experience. Multiple studies have reported that chronic caregiving stress increases morbidity and mortality for the CarePartner. The National Alliance for CareGiving estimates that caregiving spouses between the ages of 66 and 96 years who are experiencing mental or emotional strain have a 63% higher risk of dying than people the same age who are not caregivers. Additional research shows that stress from chronic caregiving negatively impacts the cardiovascular, immune, and endocrine functions. Caregivers have increased numbers of respiratory tract infections, a poorer response to influenza virus, and slower wound healing than wellmatched noncaregivers.....

For the full study results please visit the United Spinal Association website

According to the Journal, the number of young people caring for parents with debilitating conditions -- such as Lou Gehrig's disease, multiple sclerosis, lupus, cancer and heart disease -- is "large and expected to grow" as advances in medicine and technology allow people with such conditions to live longer.

A 2005 study funded by the U.S. Administration on Aging and conducted by the National Alliance for Caregiving and the United Hospital Fund Foundation found that as many as 1.3 million to 1.4 million children in the U.S. ages eight to 18 provide care for a family member with a chronic illness or disability, and more than 400,000 child caregivers are younger than age 12.

The study, based on a two-part survey that included a random sampling of 2,000 households and follow-up interviews with children and other family members, found that nearly 60% of child caregivers helped their family members bathe, dress or eat.

About 25% of the children had no help with such tasks, and about half said caregiving took a significant amount of their time, the study found.

In addition, the study found that about 60% of the children came from households that earned less than $50,000 per year, according to the study.

According to the Journal, few of the families can afford in-home health care, which costs about $140 to $180 per day, and most private insurance plans do not cover such services.

The Journal reports that the children "often have little choice" in providing care because many "live in single parent homes, with only the infirm parent" and in two-parent homes, the healthy parent might be working.

However, "placing so much responsibility on young people can end up being costly," the Journal reports.

Nancy Law of the National Multiple Sclerosis Society said, "If a family breaks apart because the burden becomes too much for a child, you're talking about two institutional placements: The parent in a nursing home and the child in the foster-care system"

Source: News-Medical.Net ©2007 News-Medical.Net

Pensioner John McIndoe was originally refused full funding to pay for round-the-clock care for his wife Christine - because regional health chiefs said her condition was not deteriorating rapidly enough.

Refusing to accept that decision, Mr McIndoe lodged an appeal.

Following a similar case - that of chronically-ill Maureen Grogan who successfully challenged a decision by Bexley NHS Trust that she was not eligible for fully-funded NHS care - health bosses agreed to take a fresh look at Mr McIndoe's situation and have now made a U-turn.

Yesterday he said: "It has come as such a relief and I'm sure it's down, in no small part, to coverage of my story in The Journal."

Sadly, the decision has come at a time when Christine's condition has deteriorated considerably.

"She has had a lot of seizures, medication isn't working for her, and her doctors have said there's nothing else that can be done," said Mr McIndoe, 75, of Western Way, Darras Hall, Ponteland.

"I'm just glad I'm not still fighting for funding at the same time as going through that.

"I feel so sorry for those who are still fighting to get the right treatment.

"I just hope mine and Christine's situation has helped to give others the strength to appeal wrong decisions."

Mrs McIndoe, also 75, a former district nurse, was diagnosed with Alzheimer's four years ago.

She can only say odd words, needs a wheelchair, and help with feeding, bathing and dressing.

Despite that Northumberland Care Trust - which used to employ Mrs McIndoe - refused to fully fund her care.

The trust said her condition was not "challenging" or "deteriorating rapidly" enough to fit its eligibility criteria.

Mr McIndoe, a retired works director, was forced to pay £600 a month from his pension towards her £2,000 care bill, with the trust and social services picking up the rest.

He was devastated at having to move Christine, his wife of 52 years, into a nursing home - and even more so when he was told her condition was not serious enough to be paid for.

She needs 24-hour care at Lindisfarne Care Home in Crawcrook, Gateshead, where Mr McIndoe visits her every day. An appeal was lodged with Northumberland Care Trust. It was referred higher up to the region's Strategic Health Authority, which asked the care trust to take another look at Mr McIndoe's situation in light of the Grogan case.

A spokeswoman for Northumberland Care Trust said: "We recognise that this has been a difficult time for this family and we are now pleased, in the light of new guidance, to be able to fund Mrs McIndoe's care under the NHS Continuing Health Care scheme."

The case of chronically-ill Maureen Grogan has ultimately led to John McIndoe winning his appeal to have his wife's Alzheimer's care fully-funded by the NHS.

Mrs Grogran, 65, from Bexley, London, has multiple sclerosis and was described by her solicitors as having "nil" mobility.

Her health deteriorated after her husband's death and, after a fall in November 2002, she was admitted to hospital.

It was decided she could not live independently and she was transferred to a nursing home in February 2003.

Care was provided by her local authority at a cost of £600 a week.

Bexley NHS Care Trust assessed Mrs Grogan three years running as not requiring fully-funded NHS care, using criteria drawn up by the South East London Strategic Health Authority.

The NHS agreed to make a contribution of £125 a week, but she was forced to sell her home to meet the rest of the fees.

Mrs Grogan, supported by her family, exhausted the trust's review procedure before challenging the decision in the High Court. She relied on a decision of the Court of Appeal in 1999 in the case of Pamela Coughlan - that if a person's primary need is for health care, rather than social care, the NHS should fund both care and accommodation.

In January 2006 the High Court judge quashed the decision not to pay for her care and health trusts were asked to review procedures.

Source: Journal Live © owned by or licensed to NCJ Media Limited 2006

Forth Valley health bosses have joined forces with two councils to fund beds at a private facility at Coalsnaughton.

The move aims to help younger people who cannot be cared for at home.

The project has seen Stirling and Clackmannanshire councils, along with NHS Forth Valley help fund 18 beds at the Marchglen at Blackfaulds facility.

The health authority said the decision to move patients to Marchglen would be taken only after "thorough assessment".

Consultant, Robert Prempeh, said: "No longer will patients with acquired brain disorders be confined in hospital beds because of lack of appropriate care facilities.

"This could open up a whole new life for them and allows them to maintain their dignity and independence in a caring but protective environment."

In a case jointly supported by the DRC and Bates, Wells & Braithwaite solicitors, Sharon Coleman won the right for an unfair treatment claim against her employer - due to the primary caring role she has for her disabled son - to proceed before the European Court of Justice later next year.

The case revolves around the interpretation of the EU’s equal treatment directive and its impact on UK disability discrimination legislation. The directive deals with equal treatment in employment and occupations and aims to combat discrimination on the grounds of religion, belief, disability, age or sexual orientation. Although she is not disabled, Ms Coleman’s lawyers contend that the directive protects her from unfair treatment which comes from her association with a disabled person. Associated discrimination is agreed by lawyers to be operative in cases of race and sexual orientation and the European Court of Justice’s decision would be the first time that disability discrimination will be considered to apply in these circumstances.

The DRC has argued strongly that associated discrimination should be an explicit feature of UK legislation.

Ms Coleman, who worked as a legal secretary for London solicitors Attridge Law, claims she was subjected to unfair treatment by her employers. In particular she claims:

• she was criticised and described as ‘lazy’ when she wanted to take time off to care for her child;
• on occasions when she was late for work because of problems with care for her child she was told that she would be sacked;
• comments were made by her manager that her “fucking child” was “always fucking sick” and that she was using her child to manipulate her work conditions;
• she was not allowed to work from home but other employees experienced no obstacles when wanting to care for their non-disabled children;
• she was placed in a pool of staff selected for redundancy after she said that she wanted to make a formal request for flexible working to care for her child.

Ms Coleman claims that these actions created a hostile atmosphere which forced her to resign in March 2005.

Currently 6 million people provide unpaid care in Britain, most of them women. Over a third of carers who provide 50 hours support or more per week have never worked or are currently unemployed.

Commenting on the decision of the employment appeal tribunal, Agnes Fletcher, Assistant Director of Communications at the DRC said:

“This case could have a major impact on the employment prospects of the 6 million people who provide unpaid care. Many of them have never been able to work. Others have struggled to balance work and caring responsibilities to the detriment of family life. Without providing protection from discrimination for carers and without family and employment policies that enable flexible working, many more British families will reach breaking point. The British economy needs those who provide care for disabled people to work, so that they can provide a decent income for their families and make provision for their pensions. Fairness at work for all employees benefits all of us.”

“Solving the problems faced by Ms Coleman and many thousands like her is the acid test for both Labour and the Conservatives’ family policies."

Lucy McLynn, a partner in Bates, Wells & Braithwaite's employment department said:

"It makes no sense that there is protection from less favourable treatment of, say, a wife on the grounds of her mixed-race marriage, but not on grounds of her having a disabled husband. This inconsistency not only leaves carers unprotected when they are a particularly vulnerable group, but also creates uncertainty for employers. A ruling from the ECJ in this case - which I certainly expect to be in Ms Coleman's favour - will clarify the scope of protection from associated discrimination and provide a basis upon which everyone in the workplace can operate lawfully".

The case comes in advance of keynote policy announcements expected from Local Government and Communities Minister Ruth Kelly and Conservative Leader David Cameron in the New Year. These announcements are the result of increasing pressure from the DRC, EOC and carers’ groups to respond to Britain’s ‘care crisis’ and to put support to families at the top of the political agenda.

Richard van der Fransen said he cannot afford Lincolnshire County Council's increase in costs and his wife cannot lift him, leaving him confined to bed.

He said the home care rise in costs had made his condition worse.

A council spokeswoman said the new charges were designed to be fairer and were based on the ability to pay.

Mr van der Fransen, from North Somercotes, said he had been paying £41-a-week for two home-help visits a day.

'Accelerated ill health'

But under the new charging scheme the cost had risen to £120-a-week which was beyond his means.

His wife Wendy cares for him but as she suffers from arthritis she cannot lift him out of bed.

"In the last week I have fallen on the floor in trying to transfer from bed to my wheelchair," said Mr van der Fransen.

"I think this has accelerated my own ill health, clearly my wife will suffer more and more because of it."

Ability to pay

Jean Lammie, assistant director of adult and social services at Lincolnshire County Council, said she could not comment on a particular case.

"The new home care costs are based on the ability of people to pay," she said.

"People are assessed and if it is found they are able to pay more they will, others who can't pay will pay nothing.

"If any individual feels they are unable to pay we will reassess them and offer them help to claim any benefits they may be entitled to."

She added the charges were similar to those levied by other local authorities.

Source: BBC News Copywrite BBC 2006

He is just like any other five-year-old - but unlike most of his peers Michael Gunstone has had to learn to look after himself as well as his mother.

Michael is one of around 2,000 young carers supported by Barnardo's - but the charity says many more are going unnoticed and unsupported.

Michael, from Pontyberem near Llanelli, south Wales, has never known a time when he was not a carer.

His mother, Janine, was diagnosed with a degenerative disease when Michael was barely four months old.

She went from being fit and active to being disabled.

'Doing more and more'

Janine manages alone with some help from her father but Michael has had to learn to care for her and to fend for himself in the house.

She said: "I remember one time when Michael was about 10 months old and he was crawling along on the floor.

"I was on crutches at the time and I collapsed in a heap on the floor and my crutches went from under me. Michael laughed. He thought it was a game.

"So I laughed too and said 'mummy's sticks'. He crawled and pulled the crutches over to me.

"As time has gone on, I have seen him do more and more for me."

Michael now helps his mother to the toilet and shower. He can fold and unfold her wheelchair and dismantle it to fit in the boot of a taxi.

"At night he will come into my room sometimes to check to see if I need to go to the toilet, and he will ask me if I have taken my tablets," said Janine.

"As well as looking after me, he has learned to look after himself. If he falls he knows I cannot get to him, so he picks himself up and comes to me.

"It has made him think before he does anything - that has become second nature to him.

"He has learnt to butter bread and make himself a sandwich when he is hungry."

Time to be a child

The two have fun together when at home - cuddling up on the sofa reading a book or playing a game. But Janine is aware that Michael is always looking out for her.

She finally phoned social services for help after an incident in which she collapsed and knocked her head and then lay unconscious for a while with Michael looking after her.

When she came to her son had pulled a blanket over to her and was smiling, saying: "Mum, I think you need to phone a friend."

Since then Michael has been referred to a Barnardo's young carers' project.

"He needs time to be a child and not worry about me," said Janine.

"When he is with young carers, he has time to himself when he can be just a child."

Source: BBC News Copywrite BBC 2006

The men, who both use wheelchairs, said the changes are unfair and will lead to large increases in some cases.

Council officials said the changes would improve the system.

Lincolnshire County Council leader Martin Hill said anyone who could not afford to pay the higher rates would be given assistance.

Stressful situation

The rates will increase from £5 to £10 an hour to a maximum of £120 a week.

"People on low incomes will be protected but those on a higher income will have to pay a bit more," Mr Hill said.

Protestor Brian Steel, who has multiple sclerosis, said: "I need carers morning, noon and night and get about 30 hours of care (a week). I am worried my costs will go from £40 a week to £120 a week."

He said the proposed increases would leave him with very little extra "residual" income for family holidays and his children's education expenses.

"It is adding stress to families already under stress."

He said a consultation resulted in a majority of people voting against the fee increases and asked for them to be phased in if adopted.

Cllr Hill said: "The payments will be phased in as it will take a while to assess the individual users."

Source: BBC News copywrite BBC 2006

After 41 years of marriage and 20 years of devoted care, James McGee was horrified to hear the county council suggest his wife might be better off in a home.

Mr McGee, 62, of Holbrook Vale, Melksham, has been looking after his wife Mary, 61, who has multiple sclerosis, for the past two decades.

She is confined to a wheelchair, has little movement, has to be fed and cannot be left alone.

Agency support workers visit her five times a day and for the rest of the time her husband is her carer.

Now the Department of Adult and Community Services at Wiltshire County Council has told the couple changes must be made to her care package.

It has suggested she either goes into a nursing home, that Mr McGee be given a direct payment to arrange her care or that live-in care be provided.

Mr McGee said he is upset at the options put forward and is calling on all carers to stage a 24-hour strike to show the strength of feeling against changes being made to care packages across the county.

"There's no way I'm going to agree to any of these options," he said.

"I want Mary to stay at home and things stay the same.

"We have shared our lives together for over 41 years and looking after her is part of my responsibility as a husband.

"If I couldn't manage I'd understand but at no time have I said I can't manage."

His wife added: "I couldn't bear the thought of going into a home. I'm horrified."

Mr McGee is angry to learn his wife's day care will be cut for two mornings a week.

Mrs McGee has been going to the Greathouse Cheshire Home, in Kington Langley, giving her a chance to enjoy a social life and her husband vital respite time.

The couple have now been told funding is not available for her transport.

"Respite is very important to support workers and myself. We all need a little break and I'm going to lose that little time," Mr McGee, who believes the changes to his wife's care are being made because of the financial problems facing the council, said.

At the end of March it was announced that the council was facing a £10.8m overspend and that cutbacks would be made across the budget.

Cllr John Thomson, deputy leader and portfolio holder for DACS, denied the suggestion of moving Mrs McGee into a home was due to financial difficulties.

"We review everyone's packages of care every year and this review has got nothing to do with financial matters," he said.

"We're looking at how we can support Mr McGee's wife as her needs are changing and the different ways this can be provided."

Mr McGee said he will continue his fight and is asking other carers in similar situations to contact him on (01225) 705141.

Source: Wiltshire Times and Chippenham News © Copyright 2001-2006 Newsquest Media Group

One of the biggest mistakes caregivers make is thinking that they can-and should-handle everything alone. Maria M. Meyer, co-author of the award-winning book, The Comfort of Home™: An Illustrated Step-by-Step Guide for Caregivers, advises caregivers to accept the practical and emotional support of other people. Sharing concerns with others relieves stress and can give new perspectives on problems. She points out that successful caregivers don't give up enjoyable activities; they make time for themselves. Other family members are often willing-even pleased-to spend time with the person in your care. Keep a list of people that can take care of your loved one from time to time. If they are not available, many organisations have respite care programs. Respite care is short-term care that helps parents, caregivers, and professionals take a break from the daily routine and stress.

In collaboration with the US National Multiple Sclerosis Society, Meyer's new book, The Comfort of Home Multiple Sclerosis Edition™: An Illustrated Step-by-Step Guide for Multiple Sclerosis Caregivers, addresses the day-to-day issues confronted by MS caregivers. The book guides readers through every caregiving stage from making the decision to provide home care, to preparing the home for comfort and safety to assisting with activities of daily living to strategies to avoid caregiver burnout. Other important topics covered include financial management, purchasing equipment, travel, therapies, and much more. Chapters are filled with special notes and tips that alert both MS patients and caregivers to important issues that make life easier for all concerned.

Being a caregiver is not for the timid and fearful. With this complete guide in hand, readers will overcome their fears, understand what help is needed and learn where to find it or how to provide it themselves.

Additional Tips on How to Prevent Caregiver Burnout:

• Do not allow the person in your care to take unfair advantage of you by being overly demanding.
• List priorities, decide what to leave undone, and think of ways to make the work easier.
• Find time for regular exercise to increase your energy (even if you only stretch in place).
• When doing a long boring care task, use the time to relax or listen to music.
• Focus on getting relaxing sleep rather than more sleep. Take several short rests in order to get enough sleep.
• Practice deep breathing and learn to meditate to empty your mind of all troubles.
• Allow your self-esteem to rise because you have discovered hidden skills and talents.
• Realise your own limitations and accept them.
Download a FREE sample chapter at http://comfortofhome.com/CTMS10_xU84.pdf

The Comfort of Home™ Multiple Sclerosis Edition: An Illustrated Step-by-Step Guide for Multiple Sclerosis Caregivers by Maria M. Meyer and Paula Derr, RN, BSN, CEN, CCRN with the National Multiple Sclerosis Society.

Length: 326 pages

Trim: 7.5 x 9

Illustrations throughout; Resources; Glossary; Index

ISBN-10: 0-966476-76-X

ISBN-13: 978-0-966476-76-7

Price: $24.95 trade paperback original

Publication: June 2006

Published by CareTrust Publications, available via Baker & Taylor, Ingram, bookstores nationwide, online bookstores, or by calling QP Distribution at 888-281-5170 (Organizations please call 800-565-1533).