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Patient Information

Advice for people who care for others

https://kingstonhospital.nhs.uk/information/advice-for-people-who-care-for-others

Are you an unpaid carer?
In a caring role at home?
Do you give care to a friend or member of your family?
If so, this information is for you


Not all carers are paid professionals. There are thousands of people across the country who help care for someone else. This might be informal. It might be just a few hours a week. It may be for a family member, friend or neighbour. You might not consider yourself a carer. But if this applies to you, we want to help.

If you find yourself in a caring role, the Carers’ Clinical Liaison Service at Kingston Hospital gives advice and information that may help.

Photo of two hands holding each other, one a young hand and the other the hand of an elderly person wearing a wrist-mounted call button

Get advice and help

You might find yourself caring for someone for a few weeks, for example, after they have had an operation or accident. Or it may be a more long-term situation. Either way, caring for someone can be a huge strain. It is vital to get all the advice, support and help you can. You are not alone.

It is better to put support in place before you get to crisis point. Do not be afraid to ask for help. This page lists lots of places to turn to. Your GP or the Carers UK helpline (details at the bottom of this page) can also help.

It is important to understand your rights as a carer and what you entitled to. You should also know how to assert your rights effectively. Carers UK1 has a web page explaining this. All the web links used in this page are listed at the bottom of the page.

Remember: you do not have to take on caring responsibilities for another person. You can decide if you are able or willing to provide care and what level or type of care you wish to give. It should not be assumed that you want to take on a caring role.

Local carers’ centre

Your local carers’ centre is a useful starting point for understanding what support you can access. They can help you navigate local services. They can also be important for emotional support and offer someone friendly to talk to if you have had a difficult day. The Carer’s Trust2 website lists the carers’ centres available in your local area. Please note, not all areas have a local carers’ centre.

Carer’s assessment

Ask your local carers’ centre or adult social care team how to get a carer’s assessment. The Carers UK1 website has more on this.

A carer’s assessment will help you understand how to look after yourself and identify any help or support you need in order to continue caring. For example, you may be able to get help transport costs to hospital appointments, or help getting respite care so you can get a break for yourself.

We do not assume that you are able and willing to carry on as you are in your caring role. You can talk to us about how you are feeling at any time.

Information online

The Carers UK1 website has free factsheets, guides, tools and online learning to help you manage your caring responsibilities. Topics include:

  • health and wellbeing
  • practical support with caring, including short breaks
  • technology and home adaptations
  • financial planning
  • working and skills
  • carers’ rights, including rights at work.
Logo of Carers UK

Look after yourself

Photo of older man enjoying time in the countryside

You may find it difficult to find time for your own needs whilst caring for another. But it is important you look after yourself. Even simple things can help, such as finding time to listen to music or go for a walk.

Caring can be lonely and isolating. Keep in touch with your friends.

Remember, you may need a break sometimes, whether this is just a short walk or a trip away. There is more information on this below.

Talk to someone

It is normal to get fed up, to be tired of the responsibility, to even resent being a carer. Feeling guilty is very normal. It is important to know your own limits and not break yourself. Tell people if you are struggling. The more we know about your situation, the more we can help.

Finding yourself as a carer can change your relationship with the person you are caring for. We understand this and are hear to help.

Find and talk to other people who are in the same situation. They can share their knowledge and tell you what they found useful. It can also be a relief to hear from people in the same situation as you. Find people through groups at your local carers’ centre or via online chat forums such as:

Photo of woman pushing someone in a wheelchair

If the person you care for needs support while you are unavailable (for example, when you are at work), you can consider care through your local authority or a private care agency. See the section below on Local Support for more information.

Counselling

You may feel that counselling would help you. It can provide an important space to help you to think about your situation and finds ways of coping. It can help you explore your feelings and your relationship to the person you are caring for. Counselling can be done face to face or online.

There are different ways of getting counselling.

  • Via your GP.
    Speak to your GP about being referred for counselling on the NHS.
  • Via your carers’ centre.
    Your local centre may have an in-house counselling service.
  • Via another local organisation.
    Speak to your carers’ centre or GP to see if there are any voluntary organisations offering counselling in your local area.
  • By paying for it yourself.
    The Counselling Directory10 provides a list of counsellors near you and what they specialise in.

Local Support

Carers UK1 and the Carer’s Trust2 have useful information and advice about what support is available in your local area.

Depending on the health condition of the person you are caring for, there is lots of national and local support and information out there. Examples include the Alzheimer’s Society, Stroke Association and National Autistic Society. Speak to your local carers’ centre or local authority for more information.

Tell people you are a carer

It can be helpful to explain that you are carer and to tell others how it affects you.

Tell your GP. Ask them to note on your patient records that you are a carer, and also on the records of the person you care for. It makes it easier for the GP to support you and the person you care for.

Empty speech bubble

Tell the hospital you are the carer if the person you care for is admitted. Hospital staff have an obligation to involve you in any discussions and decisions, particularly about discharge.

Tell your friends and family. People are often only too happy to help. Even having a few minutes of relief can make all the difference.

Tell your employer. Over five million people in the UK juggle having a job whilst also being a carer. You are not alone. Carers UK1  have some useful information around your rights as a working carer.

  • You have the right to take time off work in an emergency.
  • You have the right to request flexible working.
  • You do not have to tell your employer or colleagues about your caring role. But telling them may lead to more support from work.

You can ask your employer for a copy of their Leave Policy and Carer’s Policy.

Needs assessment

A ‘Needs assessment under the Care Act 2014’ is for the person you care for. It is carried out by your Local Authority’s adult social care service.

It looks at their emotional, physical and mental health needs. It also considers what information and support must be provided by your local authority to support these needs. Necessary support for the person can include things such as adaptations to their home that could enable them to be more independent or to remain living at home. If there is a cost to this, the local authority will do a financial assessment of the person.

Anyone over the age of 18 with care needs is eligible for a needs assessment. Carers UK1 has more information on all this.

Needs assessments and Carer’s assessments (see above) can be done at the same time if this is what you prefer. You can be involved in this needs assessment if the person you care for agrees. 

Respite care

If you need a break from caring, respite care might be an option. This is when the person you care for is looked after by someone else. This could be a one-off (for example, so that you can have a few days off or get to an appointment), or it might be a regular arrangement (such as having someone coming in for a few hours once a week, or the person you care for going to spend time in a local centre where they receive care and have access to activities). It may be arranged:

  • informally, with friends or family
  • privately, through care agencies
  • via your adult social care team.

For a local authority to provide respite care for the person you are caring for, a Needs assessment is essential (see above).

Plan ahead

It can be helpful to have a plan for yourself and the person you are caring for in case something happens to you. Carers UK1 has more on how to create such a ‘contingency plan’.

End-of-life planning

The healthcare team looking after the person you care for may talk to you both about Advanced Care Planning. This means, should the patient be unable to make decisions in the future, care professionals can ensure their wishes are upheld. Ask your ward team or the palliative care team for more information. The NHS website11 also has more on this.

Carer’s Emergency Card

Some local authorities, such as Richmond12 and Kingston,13 offer Carer’s Emergency Cards. This is a card for you to carry with you at all times. It is recognised by local emergency services. This scheme ensures that emergency cover can be put in place if something happens to you.

Photo of Carer's Emergency Card

Lasting Power of Attorney

It is sensible for us all to appoint someone we trust to make decisions for us when we no longer can. This is called giving someone ‘lasting power of attorney’. It can be for property and financial affairs and/or for health and wellbeing decisions.

You can only appoint a power of attorney if you have ‘capacity’. This is a legal term which means you can understand and use information to make a decision, and communicate these decisions. So it is important to put this in place before you lack the capacity to do it.

The person you care for may wish to appoint a lasting power of attorney for when the times comes. Carers UK1 has more on this.

Writing a will

A will is the only way to ensure that a person’s possessions, property and finances go to the people and causes that are important to them. It is worth asking the person you care for if they have a will in case something happens to them. Age UK14 has more on this.

First aid

Consider getting first aid training to prepare yourself for an emergency. There are some free introductory courses available with St John’s Ambulance.15

Eligibility for benefits

There are a number of benefits that might be available. Carers UK1 has more on these.

  • Carer’s Allowance
    For people who spend at least 35 hours a week caring for someone with an illness or disability.
  • Attendance Allowance
    For people with a long term disability or illness who have reached state pension age.
  • Personal Independence Payments
    For people under state pension age who have a long term illness or disability.
  • Disability Living Allowance
    For people under 16 with a disability.
Citizens advice logo

For more information on which benefits you may be eligible for and how to apply, contact your local Citizen’s Advice Bureau16 or use their online benefits calculator.

What happens whilst the person you care for is in hospital

Kingston hospital staff can support you in a number of ways whilst the person you care for is in hospital.

Photo of Carer's passport

During this time, you may wish to take a back seat and let us do all the care. Or you may wish to continue to help. Any member of staff, or the Carers’ Clinical Liaison Practitioner, can help you design a Carer’s Agreement. This is a document which tells staff how much care (such as feeding, washing, dressing) you would like to give whilst the person you care for is in hospital, and what aspects of their care you would like the hospital to provide. You can ask the nurse in charge of the ward for a Carer’s Passport, which allows you to spend as much time as you would like with the person you care for, during and outside of normal visiting hours. In certain circumstances, we can arrange for overnight accommodation if you want or need to provide care overnight.

You can also expect to be involved in ‘discharge planning’. As a carer, you have a right to be involved in all discussions and decisions about the discharge plan for the person you care for.

If you feel that the hospital admission has affected you as an unpaid carer in any way, we encourage you to speak to any member of clinical staff about these feelings and challenges. If appropriate, they may refer you to the Carers’ Clinical Liaison Practitioner who can talk to you and develop a support plan. This is designed to ensure you have the help and support that you are entitled to. To arrange a referral, speak to the nurse in charge of your ward.

1Carers UKhttps://www.carersuk.org/help-and-advice/
2Carer’s Trusthttps://carers.org/
3Alzheimer’s forum https://forum.alzheimers.org.uk/
4Macmillan forumhttps://community.macmillan.org.uk/
cancer_experiences/carers-only-forum
5MIND forumhttps://sidebyside.mind.org.uk/
?mc_cid=b617563c40&mc_eid=2c5ca806cc
6MS Society forumhttps://forum.mssociety.org.uk/
?_ga=2.220393629.403581449.1571688726-
1527388292.1558705608
7National Autism Society forum https://community.autism.org.uk/f/
parents-and-carers
8Parkinson’s UK forum https://forum.parkinsons.org.uk/c/
living-with-parkinsons/carers-friends-and-family/22
9Sue Ryder Bereavement forum https://community.sueryder.org/c/
coping-with-bereavement/9?gclid=
EAIaIQobChMI5JHLnquN_AIVEd
TtCh32CAPtEAAYASAAEgIe5fD_BwE
10Counselling Directory https://www.counselling-directory.org.uk/
adv-search.html
11NHS end of life planning https://www.nhs.uk/conditions/
end-of-life-care/
12Richmond Carer’s Emergency Card https://www.richmond.gov.uk/
services/adult_social_care/
adult_social_care_information_and_advice
/looking_after_someone/getting_help_in
_an_emergency
13Kingston Carer’s Emergency Card https://www.kingston.gov.uk/
caring-someone/apply-carers-emergency-alert-card
14Writing a Will https://www.ageuk.org.uk/information-advice/
money-legal/legal-issues/making-a-will/
15St John’s Ambulance first aidhttps://www.sja.org.uk/what-we-do/
our-work-in-the-community/
request-a-free-first-aid-workshop
16Citizen’s Advice Bureau https://www.citizensadvice.org.uk/
about-us/contact-us/contact-us/
search-for-your-local-citizens-advice/

Advice for people who care for others - Kingston Hospital Download PDF


Contacts

Patient Advice and Liaison Service (PALS) 020 8934 3993 (Monday to Friday, 9am to 5pm)
khft.pals@nhs.net
Carers UK helpline 0808 808 7777 (Monday to Friday, 9am to 6pm)
advice@carersuk.org

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