National Carers Week – 9th-15th June 2014
Carers Week is an annual campaign that celebrates and recognises the valuable contribution that people make when they look after an ill, frail or disabled family member or friend. There are currently 6.5 million carers in the UK and every day 6,000 people take on new caring responsibilities.
Carers UK have teamed up with a number of voluntary organisations to make carers week 2014 happen. This year they are acting on the six recommendations identified by carers as part of the Prepared to Care? Report. At the heart of this activity will be improved support for local organisations to encourage more collaborative working and supporting their activities.
The report is based on a survey completed by 2,100 carers, who shared their experiences. Key findings from the report include:
- Seven out of ten (75 per cent) carers were not prepared for all aspects of caring.
- Eight out ten (81 per cent) carers were not prepared for the emotional impact of caring.
- Eight out of ten (78 per cent) carers were not prepared for changes to their lifestyle because of a caring role.
- Seven out of ten (71 per cent) carers were not prepared for the change in relationship with the person they care for.
- Just under two-thirds (63 per cent) of carers were not prepared for the impact caring had on their career.
- Seven out of ten (72 per cent) carers were not prepared for the financial impact of their caring role.
- •Eight out of ten (81 per cent) carers were not aware of the support available because of the time it took them to identify themselves as carers.
- A third (35 per cent) of carers were given the wrong advice about support available because of the time it took them to identify themselves as carers.
- Half (46 per cent) of carers that responded to our survey had been offered a Carer’s Assessment.
As part of this survey carers stated what would make a difference to their role as carers. Their list of recommendations includes:
Better public understanding and recognition of carers
All situations are different as we and the people we care for all have different needs, challenges and lifestyles but I wish that everyone thought more about the caring role in the same way as we think about stages of life—-education, going to work, getting married, having children-taking maternity leave. So my biggest wish is that caring was something everyone talked about and recognised.
Access to information and the right support from the beginning
For many carers the greatest asset is ‘Time’…….. some things take so very long – quick access and speedy advice would be a huge bonus. It is very hard to sift through and find the sort of advice you need. I think GP surgeries should be better prepared to flag up other agencies that could help advise.
- Accept the role of “CARER” in the early stages, not deny that you are a carer. Seek information and sift out that which is relevant to YOU and NOW.
- Join a support group when the time is right for you, Talk to family and friends about how you feel. Accept help from family and friends when offered.
- Don’t feel guilty. Educate GPs to understand carers roles and the difficulties they face.
- Understand the fluctuations in many neurological conditions, eg Parkinson’s and therefore understand the fluctuations that may occur for carers and the amount of care needed.
Professionals understanding the role of carers, sharing information, decision making and planning with them.
Professionals need appropriate up to date, regular, reviewed research, education, information and training to be made available and given to them so they know and can further recognise and improve carer’s responsibilities in every way and in all aspects of a carer’s caring duties to enhance their caring for whom they care for and for caring for the future, for all and in all communities.
To help people avoid crisis instead of only helping out when in crisis. Professionals need to be more of an ally instead of having to fight them for everything, when you are exhausted from your caring role I found that to try and get any help was a massive drain on my already limited energies.
Access to good quality practical and emotional support and information as well as breaks from caring.
It would make such a difference to be able to have regular respite rather than feeling that the world will fall apart because I am exhausted. If one can put down a small weight one carries for a short time, regularly, one can carry on for very much long
Respite is my main concern – this needs to be of much better quality, more local with more availability on a more regular basis – this would assist hugely in enabling people to build and maintain relationships outside their caring role – this is currently sadly lacking.
Flexible working practices and understanding from employers.
A lot of the reason for my being able to maintain my job and hours is due to a very understanding and flexible manager. I could not have got through the last few years without her support.
I am extremely lucky that my current position is part-time in a job that I like and the manager in our tiny company is absolutely first class at allowing me to make up time whenever I need to and to dash off whenever I need to. But my income is severely reduced. I was made redundant from my previous role, where I commuted to work 60 miles away. There is no way that I would have been able to sustain this type of job combined with caring.
Financial support – fair and easy to navigate welfare system.
When my daughter was diagnosed at the age of three I was unaware of any benefits we could claim. We struggled since her birth for many years and spent all savings. Did without holidays and my husband had to work night shifts constantly to cope and care for my daughter who never slept. We did get into debt as my husband lost his job and was unemployed for 6 months. We have no debts now and try not to get into debt again. We do without.
Facts about carers in the UK
- There are almost seven million carers in the UK – that is one in ten people. This is rising.
- Every year in the UK, over 2.3 million adults become carers and over 2.3 million adults stop being carers. Three in five people will be carers at some point in their lives in the UK.
- Out of the UK’s carers, 42% of carers are men and 58% are women.
- The economic value of the contribution made by carers in the UK is £119bn per year.
- Over the next 30 years, the number of carers will increase by 3.4 million (around 60%).
- 14% of carers care for people with learning disabilities.
Sources of information and support for carers
Links to number of useful sources of information and support for parents and carers are available on our website in our PCAN Pages section.
