Carers journey - getting support at all stages of your caring life

18 Oct 17
Carers journey - getting support at all stages of your caring life

For many carers looking after someone can be a journey with different stages and experiences along the way. 

Not all carers will experience the same stages. Some carers' journeys take different directions to others, some will stay in a particular stage for a long time, while another carer will find they pass that stage by altogether.

However, there are some elements of the carers journey that are experienced by the majority of the people who look after a loved one.

This blog looks at the different stages of a typical carers journey and the information and advice that could be of use to you in each stage.

Stage 1: Identifying as a Carer

Many people don’t see themselves as a carer, they just see themselves as a family member or friend helping someone they care about. But this means carers are less likely to seek out support so it’s important that local carer support services actively try to identify carers and let them know about services to help them stay physically and emotionally well.

In Derbyshire, the County Council work with the voluntary sector, health, services and GP surgeries to identify carers and offer information to them early in their journey. 

If you’ve just become and carer, or you’ve just realised you’re a carer, you may be interested to find out more about:

Stage 2: Getting information, advice and knowing your legal rights

The most useful information and advice is the right information, at the time it's needed, and in a format which makes sense to you.

Once you’ve identified as a carer it’s vital you get the information you need to be able to make informed choices both for yourself and the person you care for.

In Derbyshire, carers and local agencies have got together to create this website to act as a one-stop-shop for information and advice about carers services. This was a result of working with carers to find out what they wanted.

Useful online advice for carers includes:

Although carers have said they appreciate leaflets and online information, sometimes what they need is someone to talk to, either face-to-face of on the phone. A range of services are in place to help carers do this:

For many carers the biggest factor on their own wellbeing is getting the right support in place for the person they look after. So it’s important to have information about whether the person they look after is eligible for support and how to access it.

Stage 3: Making use of community based and preventative support

Some carers feel they haven’t got much of a life outside caring and feel isolated and lonely. This can cause them to lose self-esteem and feel down.

Many carers find that getting peer support, working a few hours a week, exercising or learning something new helps them to relax, build confidence and cope with their caring role.

Carers support groups give carers the chance to meet other people in a similar situation, share experiences and get advice. Making use of these kind of services can impact positively on your wellbeing and reduce isolation.

Derbyshire Carers Association run support groups across the county that all carers are welcome to go along to.

Making Space Dementia Support run groups for carers of people with memory groups. They also run memory groups for people with dementia.  Other peer support groups, including those aimed at mental health carers and those who look after people with Parkinson's are active across the county. 

Find out more:

Stage 4: Getting a carers assessment 

The Care Act came into force in 2015 and gave carers the right to have an assessment of their own needs.

If you request a carers assessment, a trained worker will sit down with you to discuss your needs as a carer and how your caring role affects your own life.

The assessment will help to identify the help and support you need as a carer and the things that could make your caring role easier for you. The worker will tell you about support services, training and anything else that may help you.

In Derbyshire the majority of carers assessments are now carried out by Derbyshire Carers Association. This has recently changed – in the past other organisations also carried out assessments.

Stage 5: Personal Budgets

Under the Care Act, a carer with eligible support needs may be entitled to a Carer Personal Budget. This is a sum of money paid by a council’s adult social care department to help a carer to pay for things which will help them. Depending on your needs this could be paying for a break from your caring role or buying something to make your life easier – such as a dishwasher.

In Derbyshire Carer Personal Budgets are administered and paid by Derbyshire Carers Association.

To get a Personal Budget you must first have a carers assessment. Derbyshire Carers will then use the assessment to check if you are eligible for a Carers Personal Budget using the national eligibility criteria for carers that was introduced by the Care Act.  Carer Personal Budgets are usually awarded in bands depending on your need.

If Derbyshire Carers believe your needs as a carer are greater than can be covered by the highest band and you may be eligible for more support, they will refer you to an Adult Care worker who will assess your needs. The Carer Personal Budget page has further details about this.

Stage 6: Plans for support and looking ahead

Your carers assessments should be reviewed regularly – particularly if your circumstances change dramatically so your support worker can give up-to-date advice on meeting your needs. You can apply for a Carer Personal Budget once every 12 months.

If you feel you need further breaks from caring, the person you look after would need to have an Adult Care assessment to see if they were eligible for support. The taking a break page has further details.

If the person you look after has needs that are likely to develop or increase, it’s important that their health and social care needs are assessed and reviewed so appropriate support can be put in place.

Looking to the future, it may be worth looking into Advanced Statements, Advanced Decisions and Power of Attorney.

One of the main things you should consider is emergency planning. What would happen if you suddenly weren’t able to provide care or a day, 2 days, a week, a month? Making a carers emergency plan can help make things easier if something happens. Our carers emergency blog has tips on how to write a plan and what to include.

Looking to the future

It’s difficult but if you’re a parent carer or are older than the person you look after it’s important to think about the future. What will happen if you are no longer around to provide care? If the person you look after has a worker, speak to them about it and get some advice.

The Foundation for People with Learning Disabilities have produced a guide called ‘Thinking Ahead’ that goes through the different things you need to consider. It’s aimed at carers who look after someone with a learning disability but a lot of the advice is relevant to all carers.

Sometimes a carers journey ends as the person they look after passes away. The dealing with bereavement section had advice on dealing with grief and how to start t move on and get involved in the community.

Further information

Wherever you are in the carers journey it’s important to make use of the support available so you have the energy and emotional stability to carry out your caring role.  Many carers neglect their own health and wellbeing as they are focusing on the person they care for.

The looking after yourself section has lots of advice and details of services.

The stages of the carers journey have been adapated from 'Spotlight on a carers journey - what works in supporting carers through the Care Act' produced by National Development Team for Inclusion.