Each year we run the State of Caring Survey to help us show the reality of what it means to care for a family member or friend.
This year over 6,149 people shared their views and experiences on what life is like for carers in 2016, making this the largest State of Caring Survey carried out to date. Thank you to everyone who took part.
What we found out
8 out of 10 (78%) carers buy or receive some form of practical support with their caring role, be that equipment, technology, a break from caring or help from family and friends.
However, 1 in 5 carers (20%) who are providing 50 hours or more of care each week are receiving no practical support with their caring role.
Less respite per year means having less quality time with my husband. Day care has been reduced so having to care for more hours, feeling tired and stressed.
The care agency pulled the care from my mother with only seven days’ notice. I was forced to accept direct payment as no alternative care agency could be found.
Experiences of carers’ assessments
Across the UK, 31% of carers responding to our survey reported having an assessment of the impact of their caring role on them in the previous year.
Only a minority of those having an assessment in the last year (35%) were told how to get all the information and advice about their caring role they felt they needed, with 1 in 5 (22%) saying they received little or no helpful information or advice and felt they did not know where to go for support with caring.
Care Act: one year on
The report shows that, one year on from the implementation of the Care Act 20142 – designed to improve support for carers – carers in England are still struggling to get the support they need to care well, maintain their own health, balance work and care, and have a life of their own outside of caring.
1 in 3 carers (29%) who reported having an assessment in the past year had to wait six months or longer for it. More alarming still, over one-third of carers (39%) looking after someone at the end of their life had to wait six months or more for an assessment. Read our press release about the State of Caring in England »
Waiting a year has made the situation much more difficult and my need for help considerably greater. I definitely feel the length of time waiting has had a detrimental effect on my mental health.
All assessment areas were considered by my assessor but due to cuts there was no support they could practically offer me. I was listened to but there was no positive outcome.
NHS – experience of hospital discharge
Of those caring for someone who had been discharged from hospital in the previous year 6 in 10 carers (57%) said that they did not feel that they had a choice about providing care to the person following their discharge from hospital.
Over half (55%) of those said that the person they care for was discharged from hospital too early.
No additional help was offered. I got three hours’ notice and she was a two hour journey away. I don’t drive so had to beg for help from a neighbour.
44% are struggling to make ends meet rising to nearly half (48%) of those caring for 35 hours or more per week.
A quarter of carers (26%) report that they have been, or are currently, in debt as a result of their caring role.
Three quarters (73%) of carers who are struggling to make ends meet say worrying about their finances is affecting their health.
I constantly worry about bills and wake up early feeling anxious about money. We have some savings but I am now in my 60s so I’m worried about depleting them.
Caring and work
Of full-time or part-time employees responding to our survey, 7 in 10 (70%) have used their annual leave to care and almost half (48%) have done overtime to make up hours spent caring.
Half (49%) of carers responding to our survey have given up work to care. Nearly a quarter (23%) reduced their working hours while 17% have had to take a less qualified job or turned down promotion to fit around caring.
Nearly a third (31%) of working carers felt that the support they need to manage work and care or to return to work was not properly considered in their assessment.
I had to reduce my working hours because of my mum’s health and now only work 11 hours per week and I am not entitled to any financial help. I gave up a wonderful job that I loved with an excellent salary.
Carers' expectations and priorities
In the next year, half (54%) of carers expect their quality of life to get worse, while only 6% think it will get better.
Carers UK wants to see carers’ priorities reflected in the agendas of all the UK’s legislatures and in the new cross-government Carers Strategy in England. In the next few weeks we’ll be publishing the policy changes we want to see in the strategy and we’ll be using evidence gathered from carers to inform our submission to the strategy call for evidence.
- Improve financial support so that carers and their families do not suffer financial hardship as a result of caring.
- Greater investment in social care and health funding is urgently needed to ensure that new legal rights for carers being introduced have the finances behind them to make life better for carers. Carers UK is calling for a sustainable funding settlement to meet the needs of our ageing society.
- Improve carers’ health. Carers UK is pressing for a duty on NHS to identify carers and measures to make hospitals and other health settings more carer friendly and to increase funding for carers’ breaks.
- Strengthen rights for carers who want and need to juggle work with care with more statutory rights to time off from work to care.
The Government’s call for evidence for the new Carers Strategy for England is open until 30 June 2016 – click here to make you views heard.
As well as the key areas where we need to see long term changes for carers, the report also sets out some immediate actions for national and local government which would make life better for carers in 2017.