Carers in crisis forced to cope alone

New Carers UK survey: Back Me Up – supporting carers when they need it most

When the phone rang in the middle of the night to say that her son was seriously ill in hospital some 200 miles away, Linda’s first instinct was to drop everything and rush to his side. But Linda is a carer for her severely disabled husband Philip. He needs constant care and regular medication, so leaving him on his own was not an option.

On trying to get emergency help she was told to call back in the morning. All the time she desperately wanted to be at her son’s side. What should she do?  

The issue of carers being forced to cope alone in an emergency is vividly depicted in a new survey undertaken by Carers UK – the leading organisation of carers to be launched on Thursday 27 January 2005.   

Called Back Me Up – supporting carers when they need it most, the report draws on the stories of some 1,207 carers who describe in their own words a crisis situation and how it affected their lives, sometimes with devastating consequences.

One carer tells her story of struggling to arrange alternative care for her disabled husband when she was rushed to hospital with a heart attack. She reports, ‘I had to arrange everything myself by phone. I spent more time in the phone box than I did in my hospital bed.’  

This is typical of many carers who put their own health at risk because of inadequate support.  Some carers reluctantly discharge themselves from hospital against medical advice because there is no one to take over their caring responsibilities.  Other carers are unable to be with their family at times of crisis, such as bereavement and terminal illness.  When carers need replacement care in emergencies, services are letting them down.

“These situations are every carer’s worst nightmare.” says Imelda Redmond, Chief Executive of Carers UK. “Our survey found that 96 per cent of carers worry about what would happen in an emergency and how they can find replacement care.  These anxieties mean that a lot of carers lead restricted lives, reluctant to leave home to visit friends or go shopping just in case something unexpected should happen to them.”

Yet, according to Back Me Up, there are simple, inexpensive solutions which are already working well in some parts of the country.  Overwhelmingly, at the top of carers’ priority list, is someone at the end of a telephone who can sort out replacement care at short notice.  Carers UK is calling for a Carer Emergency Scheme across the country – a fourth emergency service which could be a real life-saver for carers   Already 20 local authorities have this in place.  This needs to be replicated countrywide.  

These Carer Emergency Schemes provide a 24-hour response service.  They hold a pre-prepared emergency plan which can be put into operation with a single phone call.  The importance of such schemes is that the responsibility for finding replacement care is lifted from the carer, allowing them to get on and deal with their emergency.

Other simple solutions suggested in the report include:

• providing information to carers about who to call in an emergency
• providing professional help to assist carers with planning for emergencies
• promoting the use of new technology, such as fall monitors, which can give carers peace of mind
• investing in emergency replacement care services, including at night and at weekends

”Every year 2.3 million people become carers for the first time,” continues Imelda Redmond.   “Most of the time they cope with relatively little outside help, drawing on family and friends – thereby saving the state a massive £57 billion per year. Yet our survey shows that when carers need help the most, services are not there to back them up.  With just a little investment, carers could have peace of mind, knowing that there will be proper support should they need it.”

For carers who are worried about what might happen in an emergency, Carers UK has produced a useful guide to help them plan for such eventualities which can be downloaded on their website: www.carersuk.org.

Further information:

Patricia Orr/Simon Goldsborough.  T. 020 7222 5510  M. 07889 140139

Gavin Macgregor/Matt Hill , Carers UK. T. 0161 953 4233 M 0787 627 8233

Notes to Editors

1.    A pdf of the survey is available.  Please contact the numbers above.

2.    Case histories and spokespeople are available.  Please contact the numbers above.

3.    All the materials relating to the Back Me Up campaign, are available from www.carersuk.org/backmeup including

• Back Me Up survey

• Carer’s Guide containing tips for planning for emergencies. Carers can obtain the guide containing tips for planning for emergencies by calling 020 7566 7617

• a list of Carer Emergency Schemes in England

• a Best Practice briefing for professionals describing the measures which makes a difference for carers in dealing with emergencies.

4.    Research methodology: 3000 questionnaires were distributed to carers and organisations which support carers, including cares from minority ethnic communities and gay and lesbian carers.  The questionnaire asked carers to describe in their own words an emergency situation and how it was dealt with. 1,207 questionnaires were returned.

    Of these:

• 51% were caring for an older person

• 19% were caring for an adult with a learning disability

• 9% were caring for someone with a mental health problem

• 15% were caring for an adult with a physical disability

• 6% were caring for a child with a disability

• 95% were current cares

• 35% of carers were over 65

• 3.5% were carers from minority ethnic communities

Follow up telephone interviews were conducted with the case studies outlined in the     report.

5.    Carers UK is the leading organisation campaigning for a better deal for carers. According to Census figures, there are nearly six million carers throughout the UK, caring for elderly, sick or disabled relatives.  The care they provide is unpaid.  The value of their support has been estimated at £57 billion per year.