How do you define a carer?
The NHS define carers as: "anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid."
One of the big challenges employers have is around identifying who in their workforce is a carer. This is for two reasons:
1. Carers often don't see themselves as 'carers' and see their role as just what anybody else would do in the same situation.
2. Employees are often reluctant to speak with their manager about their caring role, worried that it might change the perception of their professionalism.
How can I get involved?
We operate Mobilise with an 'open-source' philosophy because we believe that the more people are able to contribute, the more effectively we will be able to help carers.
We are always keen to hear stories of people who have experience of our caring role, either through our podcast, or our blog.
Is it always best for a carer to keep their job? What about when they're needed at home?
Our mission is to make sure that carers have the support they need. It's for the carer themselves to decide whether they need to leave their job to become a full-time carer. Our role is to make sure they make that decision in full knowledge of the options open to them, and confident that they'll have the informed support whichever route they choose.
Will you tell my employer about my caring role?
All the conversations we have with you are confidential. We only share with your employer the high level trends in their organisation, and how they compare to national benchmarks.
Am I a carer?
A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (This is the Carers Trust definition)
Not everyone likes the word "carer". We are partners, parents, husbands, wives, children, grand-children, siblings, friends and more. It can be helpful to also use the word "carer" when it comes to accessing support and information.
"I'd say if you pop in to your Mum's with shopping from time to time - babe you're a carer. If you drive over to see your Dad every weekend and find yourself giving the kitchen a quick once over, dude you're a carer." - Maud&Mum
“At first I never classed myself as a carer, just a mum to my disabled son. But I now accept the fact that I am a carer” - Samantha Perry
What about benefits?
This can seem confusing and complex but don’t be put off finding out what you and your cared for are entitled to.
Other carers have said they found the Turn2us Benefits Calculator useful, there is also a Find an adviser tool that can help you to get help that is local to you.
Maybe also have a look at charitable grants that could be available for you and your cared for as well as support from your Local Authority.
“My son gets DLA (Disability Living Allowance), butI don’t qualify for Carer’s Allowance as my earnings are over the threshold.” - Samantha Perry
“Yes! Go for everything. Apply for Attendance Allowance for loved one first.” - Maud&Mum
What about work?
Whether you are able to work or not may depend on your caring situation. For many work is an important part of maintaining a normal life. For others juggling work and caring can be stressful, leaving work or reducing hours might be something to consider.
Do have a conversation with your employer about your caring situation, they may be able to support you in ways you hadn’t realised.
Don’t forget that the experiences and skills you develop in caring will be attractive to potential employers too.
“What am I doing, why am I stressing myself out with work? That’s when I made the decision that work has to go.” - Dawn
“Work is essential for my well being, which is just as well because let’s not beat around the bush, my family needs the income.” - Maud&Mum
What support is there for me?
It’s worth looking around a bit to find the support that is right for you. Online groups and forums, condition specific support, local carers centres or just others around you in a similar situation can all be useful.
Carers UK has a phone line, online forum and can connect you with groups that are local to you
More formal support is also provided by local authorities, employers, NHS and your GP practice.
“I am a member of a few online groups. Also my son’s school are great.” - Parent Carer
“There is (some) support. You need to be blooming tenacious and resilient to get it. Pathways to care can be veiled by people or language, often unintentionally. The onus is on the carer too often. Ask for help from someone who has done it, your local carer group can help, so you don’t waste energy reinventing the wheel, eg use the right (unemotional) language on forms. Sadly too often we can be reduced to tears of frustration, despair even. My message would be ‘don’t give up my love and hold my hand’.” - Maud&Mum
I've heard about a "Carers Assessment" - what do I need to know?
“A carer’s assessment is for carers over 18 years old who are looking after another adult over 18 years old who is disabled, ill or elderly. It is an opportunity to record the impact caring has on your life and what support or services you need. The assessment will look at for example, physical, mental and emotional needs, and whether you are able or willing to carry on caring.” Find out more from Carers UK
Which? have some helpful information about Carers Assessments and a checklist to help you prepare so that you get the best out of the process.
“I think I would at least find out what the process is to have a carers assessment in your area, make contact, have a chat and check you have all the info and support you need for now. The person you are caring for can also be assessed for support, the 2 assessments can be combined, but only if you think this is right for you” - Suzanne
“It is free. Everyone is eligible for one. It does not go into your financial situation and it won’t necessarily unlock financial help but can help signposting to further help.” - Maud&Mum
Who should I tell about my caring situation?
Telling people normally opens up different types of support:
- Your GP (they should hold a practise carers’ register and you are entitled to a free flu jab)
- Employer (your boss, your colleagues and the HR department)
- Your Local Authority - even if you don’t want any support at the moment
- Your friends and family
The person you are supporting may not see you as their carer and may choose not to tell many people about their situation, so do discuss it with them too.
”Tell freaking everyone. 1) it must not be whispered or taboo 2) caring must be famous for what it is, a human/humane gesture, kindness, cool, valued and valuable 3) a little bit of help from a lot of different places adds up to a lot. Eg I don’t ask my neighbour for help often but I know she has my back” - Maud&Mum
“Definitely worth telling your GP! You are entitled to a double back to back appointment if you are a carer!” - Kyro
What top tips do other carers have:
We will all have our own individual situation but finding out what other carers suggest is a great place to start. These are top tips from some of the Mobilise community:
1. Tell people - friends, GP, employer
2. Sign up as a member of Carers UK - it’s free
3. Contact your Local Authority and ask for a Carers Assessment
4. Look after yourself both physically and emotionally
5. Connect with your local carers support
“Find your nearest carers center. They have access to loads of information and even support that you didn't know was available including understanding how you are feeling.” - Parent Carer
“Find ways to look after yourself - get into good self-care habits.” - Suzanne
“First things first. Check loved one is getting Attendance Allowance and build from there" - Maud&Mum
Who can I talk to?
It is a great idea to talk to others. Think about what will be best for you. Here are some ideas:
- Carers UK Forum: Join a welcoming online community of carers and former carers who share advice and information as well as support each other
- Carers UK Helpline: Open Monday - Thursday 10am-4pm 0808 808 7777
- Samaritans: If you are struggling and need to talk through your situation any time of night or day. Call 116 123 for free.
- Don’t forget your friends and family too.
“Parents in the same position, online forums have been a blessing at times” - Samantha Perry
“Best use of my carer “spare time” was my local carer peer support group - laughter and tears but oh so good” - Martha Wiseman
“I have 2 amazing friends who absolutely get it when I need to off load. They just listen. If you are lucky enough to have a well being helpline at work they can be great too” - Suzanne
“My Carers Bucks group carer mates. My friends (a bit). Online forums too” - Maud&Mum
How can I take care of me?
We love that you are thinking about this and we would encourage you to make this a priority without adding further pressure to yourself about things you "should" be doing. Start with simple steps like stepping outside for fresh air or a walk if you can, keep hold of (or return to) the things in life that are important to you, keep talking and don’t put off looking after your own health.
”Cut yourself some slack. You are superhuman but you are still human. At the end of the day you know when you have hit that wall and many times you have to push through it but you have got to give yourself some time for you otherwise you will get lost. Remember there are going to be days your not going to get through that list and there are going to be days when your greatest self achievement is going to be warm cup of tea and that's ok.” - Parent Carer
Where can i get information?
Carers UK website is a good place to start. Your local authority will also have web pages with information and useful links.
There are some great bloggers out there who share tips and advice in a friendly way. One of our favourites is Maud and Mum
“That’s an easy question, the Carers UK Looking After Someone booklet - it has so much info in it for carers from where to start, carers assessment, to coming out of hospital, managing affairs, taking a break, equipment and technology, working carers and more, all in one booklet.” - Jaqui