Making time for you

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Making time for you

Exploring your own needs as a carer

Carer’s Assessment

  • If you are 18 years and over and are providing care to someone 18 years and over you are entitled to an assessment of your own needs. This assessment will be carried out by your local adult social care team. How much care you provide and how much money you have is irrelevant. As long as your life is affected in some way by your caring role you are entitled to an assessment. If there are other people in your family providing support to the same person they too may benefit from a carer’s assessment. A carer’s assessment isn’t rationed to one per cared for person!
  • If you are under 18 you can still be assessed, but this is called a Young Carer’s Assessment. Parent Carers of a child under the age of 18 have similar rights to adult carers caring for an adult. 
  • Don’t be put off by the word ‘assessment’. It isn’t about checking up on you, it’s about having a conversation with you, exploring how caring is impacting on you, what your own needs are, and seeing if you are eligible for any help and support. You can ask to have a separate assessment or you can combine your assessment with the social care need’s assessment of the person you care for.  It’s up to you.

In Surrey you can access an assessment by:

  • Contacting your local social care team: Ring the Adult Social Care Contact Team on 0300 200 1005 or email: contactcentre.adults@surreycc.gov.uk  or you can complete the online form.  
  • Asking the person you care for’s GP to make a referral on your behalf.
  • The assessment can be done over the phone or face to face. However it is undertaken, it should include exploring with you:
  • The level of care you are willing and able to provide
  • How caring is impacting on your life, including work, education and leisure
  • Which of your needs meet the government eligibility criteria and therefore have to be addressed by the social care team.
  • To help the social care team decide if you have eligible needs, you will be asked three questions:
  • Are your needs the result of providing necessary care?
  • How is your caring role impacting on you in terms of your day to day life?
  • Is there, or is there likely to be, a significant impact on your wellbeing as a result of caring?

If the answer is yes to these questions you are likely to be eligible for help and support.

  • If the assessor decides you do have eligible needs then Surrey County Council are legally obliged to meet those needs and must draw up a support plan for you showing how those needs will be met. This may involve directly providing, or arranging through another organisation, support or services to help you in your caring role and to have a life outside of caring, but it might also be by providing services to the person you care for. It could be a mix of both. Alternatively, you or the person you are looking after, can request a direct payment, which is a payment to enable you to buy services to meet your eligible needs.
  • Although there is a financial assessment undertaken in relation to any social care provided to the person you care for, in Surrey there is currently no financial assessment or charge for services or support to you as the carer.

Things to think about

  1. Consider how you would like the assessment to be carried out. Do you want a separate conversation with the assessor away from the person you care for, so that you can be frank about your caring role?
  2. Think about who else you would like to involve. Would you like another family member with you or someone independent to help express your needs? Action for Carers in Surrey can give you support with the assessment process as well as refer you for an assessment. 
  3. Where would you like the assessment to be carried out? Would you like this to be in your own home, at the hospital or hospice, or at the local social care teams office? 
  4. Prepare for your carer’s assessment by thinking about what you want to cover and discuss with the assessor. Be honest and realistic about the impact of your end of life caring role, including what you are willing and able to continue with.  

For more in depth information about your legal rights to a carer’s assessment and eligibility for social care support go to the Carers UK website.  

Carer Support Needs Assessment Tool (CSNAT)

  • All hospices providing palliative and end of life care to adults in Surrey are rolling out the use of a Carers Support Needs Assessment Tool. This short simple tool is designed to enable carers to identify what support they need to help them provide palliative and end of life care for a family member or friend. 
  • It is not a substitute for a statutory carer’s assessment. Instead it is a short simple question and answer tool which highlights the 14 most common areas or domains of support that research has shown to be helpful to carers. You can use the tool to indicate whether or not you need more help or support in relation to each of those domains. 
  • The tool enables you as the carer to identify with a practitioner at the hospice those areas of care which are most important to you at the time. It gives a vehicle for a conversation between you about what your individual support needs are and to create an action plan. 

Social Prescribing

  • Social Prescribing is a free service run by either your local borough or local voluntary services for residents in Surrey that can explore your own health and wellbeing and put you in touch with a wide range of local services and activities in your community. It’s designed for people like yourself with a range of social, emotional or practical needs who could benefit from a little help navigating their way through the community-based services and organisations available locally. 
  • You can access one to one appointments with a Wellbeing Adviser or Social Prescriber where you can talk about your concerns and the factors that affect your health and wellbeing.  Referral to an advisor is in most cases via your GP practice, but referral routes can vary depending on where you live in Surrey.  
  • Two of the hospitals in Surrey (Epsom and St Helier University Hospital and Royal Surrey County Hospital) have also adopted Carer Passports. The Carer Passport gives carers concessions for parking, food and drink at the hospital, and entitles carers to open visiting hours. One of the key outcomes of the passport noted by staff is that carers feel recognised and included as a partner in care. For further details talk to a member of staff at these two hospitals.

Having time out from caring

  • Taking a break from caring for the person who is terminally ill is vital for your own health and wellbeing. If you don’t take a break then there is a danger that you will become unwell yourself and be unable to continue caring for them.  Sometimes taking a temporary break from caring is called ‘respite’. 
  • What sort of break you have and how long that break is will depend on what works best for you and the person you care for. It is sensible to talk with them about taking a break from your caring role when planning ahead together. You may prefer a few hours regular break each week, or you may want less frequent but longer breaks enabling you to take a holiday, catch up on sleep, or to pursue a hobby.
  • Whilst having that break someone will need to look after the person you normally care for. This could be another family member, a care worker coming in to provide support in the home, or a stay in a care home or hospice.

To access a break you can talk to:

  1. The person you care for’s GP or nurse about organising a regular break.  In Surrey we have a GP Carer Breaks Scheme. Most GPs in Surrey are able to prescribe a carer a one-off grant up to the sum of £300 in order to meet a carer’s health needs.   
  2. Your local Surrey County Council social care team. You are entitled to your own carer’s assessment and as a result of that assessment you may be offered your own support. This could be in the form of a direct payment to enable you to pay for a day out, a short holiday or to pursue a hobby or interest. Social care teams will also assess the person you care for, with a view to arranging care for them (or giving them a direct payment) so that you can safely leave them and have peace of mind. Social care support for the person you care for is however subject to a financial assessment.
  3. Specialist voluntary providers. There are a number of voluntary organisations and private care providers in Surrey that can help you to have a break. In particular Crossroads Care Surrey (in partnership with the NHS) can provide a free, end-of-life carer support service for carers and people affected by life-limiting illnesses. A palliative-care-trained carer support worker will take over the caring role, giving you, the unpaid carer, regular breaks.  Crossroads also run a variety of social clubs for adults with disabilities, including dementia, which may help you to have a break. If looking for a care home provider which offers respite Care Choices may be of help to you.   

If you need help to access a break from your caring role, or need more local information about carer breaks talk to Action for Carers Surrey or if you want additional information outside of Surrey access Carers UK’s factsheet about taking a break. 

Things to think about

  • Try to get a good night’s sleep, although this can be difficult when you are a carer. The person you care for may need help during the night and you need to be with them. Worrying about them and their end of life care can also keep you awake. You can try to relax before bed with a book, magazine or hot bath, or call a friend to help you relax.
  • Do something you enjoy such as running, swimming, yoga, or just walking in the park. Sometimes it helps if you can find a friend who shares a similar interest to go with.You can discuss how to access local facilities and classes with a member of your local social care team during your carer’s assessment.

3. Try to avoid feelings of guilt and anxiety as this can put you off setting aside that necessary time for yourself. It is normal to wonder if the person you care for will be well looked whilst you are not there, but try to remind yourself that you come back better able to deal with the demands of end of life care.  

Managing your time between work and care

  • You may be trying to juggle a job with your caring role which is putting you under a lot of pressure and stress. There are statutory rights for carers under the Equalities Act 2010. As you are looking after someone who is terminally ill, you are protected from discrimination because of your caring responsibilities. This is because you are counted as being ‘associated’ with someone who is protected by the law because of their age or disability. This means your employer cannot treat you less favourably because of your caring responsibilities. 
  • For more information on these statutory rights and what to do if you think you are being discriminated against go to the Carers UK website.

Things to think about

  1. Decide if you want to tell your employer about your caring responsibilities. Although you may prefer not to, it’s worth bearing in mind that if you do tell them your employer can take into account the home pressures you are under and may even be able to help you access some support eg. in-house counselling service.  Some employers even have a carer’s policy or a carer support group to support staff in the workplace. Talk to your manager or to someone in HR to see what is in place for carers.
  2. Think about talking to work colleagues about your caring situation as they too can provide support. You may well find that other colleagues are carers and it gives you someone to talk to.

Think carefully before giving up your job if you feel you cannot manage your time.  Talk to your manager or someone in HR first about what you need to enable you to stay at work and if this is feasible. Consider all options, including a career break, early retirement or voluntary redundancy. A carer’s assessment via your local social care team may also help as there is a legal obligation for your work that needs to be addressed as part of this assessment. For help in exploring your options you can contact an Action for Carers Advisor on their helpline, call them on 0303 040 1234.

Looking after your own health

  • If you are caring for a person with a terminal illness, it can be difficult to find time to think about your own health needs. However by ignoring your own health needs you may become unwell yourself and be unable to provide the care and support that you want to.
  • If feeling stressed you may find you are eating too much or too little, drinking more alcohol or smoking more. You may find you don’t have time for exercise or to make medical appointments when you need to. The caring role itself may also be putting a physical toll on your body, particularly if you are moving and handling the person you care for.  

Things to think about

  1. Healthy eating is just as important to you as it is to the person you care for, but with so much else to do it is easy to slip into bad eating habits. Deciding what to cook each day is time consuming, so think about planning meals in advance and do one big shop each week. Batch cooking and dividing into portions is another good way of cooking in advance. Consider online shopping which you can do at any time of the day or night.
  2. Try to find opportunities for exercise and keeping fit. It will also help relieve stress, improve your self-esteem and make you happier.   
  3. Register as a carer with your GP surgery if you haven’t already done so. If your doctor knows you are a carer, they can ask you about any physical or mental health issues you may have because of caring. Think about arranging a health check. This is likely to involve checking your blood pressure, weight and urine as well as a general discussion about your health. Your pharmacist can also help. If registered as a carer, the practice can try to be more flexible in terms of finding you appointments as well as referring you for further support using the Surrey ‘Carer’s Prescription’ scheme.  You may also be able to access a one- off GP carer’s break payment to support your own health needs, for example to fund an exercise class.  Ask your surgery for a registration form or download a form. 
  4. Be mindful that you will be vulnerable to injury, particularly when you are moving and handling the person you care for. It is not dependent on age or how fit we think we are and the effects on our health can develop over a period of time. If moving and handling the person you care for make sure you get the right information and training.  Action for Carers Surrey’s Moving and Handling service provides safe solutions for carers who carry out moving and handling as part of their role. This support is free. 
  5. Our mental health is also very important when providing end of life care. So talking about your feelings and not bottling everything up is vital. You may have a very compassionate and understanding family member or friend that you can talk to, but you may prefer to talk to someone who is more independent, for example:
  • your GP​
  • carer lead at your local hospice. Go to our Directory and Further Information.
  • Action for Carers Advisor on their helpline for further information or call them on 0303 040 1234.The advisor will also be able to link you up with a local support group which is a great place to talk with other carers, or suggest an online forum if it is very difficult to get out to a support group.