New research by Which? has uncovered serious failings that are leaving family carers picking up the pieces of inadequate home care.
Which? asked 40 family carers to keep a diary about their experience and that of their cared for relative. One daughter’s diary told of her mother having her face washed with a flannel with faeces on it and being dressed in yesterday’s soiled clothes. Others spoke of relatives going all day without food or drink, untrained staff using lifting equipment, mix-ups with medication and alarm pendants left out of reach.
The diaries also reveal the toll on family carers who said that their own health and well-being was suffering as a result, leaving them impoverished and stressed: one said she was ‘struggling to make ends meet’ another wondered how much longer she could carry on ‘with this stress of caring’. In an audio-interview, one daughter spoke of failings in the care for her wheelchair-bound father, including how he was left in bed for 15 hours when carers failed to turn up.
A separate Which? survey found that, on average, for every five hours of paid for home care, a family carer spent one hour sorting things out. Poor quality care also meant that one third of family carers asked agencies not to send a particular worker back as they were not up to the job.
Common complaints throughout the research included missed visits, inconsistency and duration of care. Four in ten (42%) of those surveyed reported at least one missed visit in the last six months. More than a quarter (28%) were unhappy with the length of care visits and more than half (52%) had to repeat information unnecessarily to different people.
Family carers are often poorly informed about available support and Which? found only a third (37%) surveyed were told about their right to a carers’ assessment. Nearly half (47%) of those receiving council funding are worried about care being reduced or taken away.
Half of family carers surveyed had concerns or complaints about their care provision. However those who complained to care agencies were largely unsatisfied, with only a quarter (23%) stating that efforts had been made to prevent a problem repeating.
Which? Executive Director Richard Lloyd said:
“Our research shows vulnerable people left scared, hungry and sometimes put at risk, and when things go wrong, it is family carers that bear the brunt, giving up their hopes and plans, even sacrificing their own health.
“Family carers shouldn’t have to struggle alone. The government has promised a high standard of care and support. Those words must now be turned into urgent action for the families affected by a system that is failing them today.”
Which? believes that much of family carers’ stress stems from not knowing their rights, a lack of advice as they begin to care and an absence of ongoing support.
Which? will be responding to the Draft Care and Support bill by calling for measures to improve home care, including:
Local authorities to increase the quality and availability of advice to help people make the best possible care choices right from the start;
Carers must be made aware about their legal right to assessment for support;
GPs need to be aware of the health impact of caring and trained to identify vulnerable carers so that they can sign-post effectively;
Social care users need an independent advocacy service, so that individuals and families concerned about the quality of care can complain with confidence; and
15 minute care visits must not become a ‘one size fits all’ approach to home care and local authorities should do more to commission person-centred services.
Carers UK chief executive Helena Herklots said:
“These powerful personal stories highlight how the chronic under funding of social care services too often leaves families without the vital help they need, or struggling with poor quality or unreliable services. Better quality and better funded services that families can have confidence in must be a priority for the Government as it takes forward its reforms to care and support services. Families shouldn’t have to keep picking up the pieces of a failing care system.”
Notes for editors
1. For a copy of the article from the October issue of Which?, audio material, for an interview with a Which? spokesperson or with a family carer, please contact Katya Nasim 020 7770 7805 firstname.lastname@example.org
2. 40 family carers kept a diary for part of May or June 2012, detailing their experience of caring and the care received by their relative. The diaries were assessed by experts including Julia Burton-Jones of Dementia UK; Colin Slasberg, ex-council assistant director who specialises in commissioning and research; and Dr Rekha Elaswarapu, who previously worked for the Care Quality Commission. The panel also included a family carer and strategy adviser who does not wish to be named.
3. 284 Which? Members who are family carers whose relative or friend receives paid-for home care completed a W? Connect online survey in July 2012.
4. Example quotes from family carers’ diaries.
A family carer told us: ‘I have little time for my immediate family. I am losing contact with my friends as I have to plan around the caring role and often feel too tired and depressed to socialise.’
One husband’s diary simply said: ‘I have spoilt my own health [caring]. Now I think – who is there to care for me?’
One daughter told us she is: ‘Struggling to make ends meet’.
Family carers also told us about the fear of complaining, with one saying: ‘It is difficult to have sensible conversations with the agency about the standard of care because you are fearful it could be taken out on Mum.’
One daughter, living and caring for 90-year-old mother said: ‘Sometimes I wonder how much longer I can carry on with this stress of caring. I wish that I could more often show Mum I care, rather than just being a carer.’
5. An audio-interview is available for broadcast with family-carer Janet, whose father was wheelchair-bound. To listen please click: http://whi.ch/HomeCareInterview
Example quotes on carers not turning up at agreed times: ‘He was put to bed so early that he might be there for 15 hours’, (they would give him) ‘lunch an hour after they’d given him breakfast’, ‘he had to sit in urine-soaked trousers all day.’
On the care provider’s response to Janet’s complaint: ‘We..got it right 62% of the time’
6. One of our experts, Dr Elaswarapu said: ‘Family carers today will become recipients of care if they are not enabled to live a life that maintains their health and wellbeing.’
7. Home care is often council-funded but provided by private agencies. Half (52%) of family carers’ surveyed think that the home care system lacks a joined-up approach.
8. Which? has conducted two investigations on home care in 2012. For more on our April 2012 investigation see: http://bit.ly/Noge1F
Over the course of the two investigations, 70 people across Great Britain kept diaries, and 1,210 members completed surveys.
9. July’s white paper on social care acknowledged a postcode lottery and inconsistent quality of care provision. For the response from Which? see: http://bit.ly/PQmwsL