How to look after you too
To avoid a crisis, looking after your own needs is just as important as looking after the person you care for. You are important. Read on for a summary of the things you need to be thinking about.
Caring for a family member is often seen as nothing unusual and something you just do if a person that you love needs support. Some might say ‘I am not a carer I am just their partner/husband/wife/father/daughter’. Some might say ‘As a family member, it is my duty to care for them’. This is how families work of course, and caring for loved ones can be such a positive and rewarding experience. A family member might feel safe in the knowledge that they will always be there and do their best to meet their loved one’s needs because they care about them, as well as care for them. It also might mean less worry because they can trust themselves to looking after their loved one properly.
Keep track of your own needs
While you as a family carer are likely to focus on your caring role the most, it is vital that you do not neglect or forget your own needs. Caring can be difficult and tiring work. Carer’s groups often warn of the potential negative impact of caring. This can include: loneliness, social isolation, anxiety, frustration, and depression, lack of sleep, money worries and sometimes low self-esteem. It is a long list!
It therefore can be helpful to carry out a separate audit of your needs as a carer. This is so important because a crisis can also result if your own needs are not being met properly. Have a look at the four questions below. If you answer no to any of them, read the following information, click on the links for more information and hopefully get it sorted:
Questions to consider
Have you had a Carer’s Assessment in the last 12 months?
Have you told your GP that you are a carer?
Have you asked your GP Practice about having a health check?
Have you got a Carer’s Emergency Plan?
Get a Carer’s Assessment
Being a carer can be an isolating and demanding experience, which can have a significant impact on health and welfare over time if your own needs are not met along the way.
All carers are entitled to a Carer’s Assessment. It is not compulsory, but is a good way to focus on your own needs, which often tends to be the last thing we worry about. The Carer’s Assessment is just about you and it can be arranged separately or at the same time as your loved one’s Care Review, whichever you wish.
To arrange for an assessment, contact your Local Authority Adult Services department if the person you care for is 18 or older. If you are a parent carer of a person under 18, contact your Children and Young People’s Services.
Carer’s assessments Carer’s Trust
Time to think about you
Factsheet: Carers’ Assessments in England for parents/carers of children with a learning disability
Eligibility criteria for carers with support needs under the Care Act 2014
Look after your physical health needs
Making the most of your GP Practice
General Practice is evolving to try and keep pace with increasing demand and dwindling resources. The arrangements your practice makes may therefore vary to meet the local need.
The roles and the number of staff involved can also vary according to the size of the practice. These could include: resident or locum GPs, practice manager, pharmacist, practice nurse, healthcare assistants, admin staff. There may also be a number of specialist clinics for things like: diabetes, respiratory illness, antenatal care, family planning and ‘Well Women’. There may also be access to therapists, district nursing and paramedics.
Another development is the increasing use of Practice Champions. These are members of staff who have a skill and interest in a particular topic, such as learning disability, dementia and carers.
Tell your GP that you are a carer
Make sure your GP Practice makes a note of your loved one’s current diagnoses and disability and also your carer status on their computer system. This is called ‘Flagging’ and is important so that all the health staff with access to the system can see what your needs are straightaway. Find out more about how to help your GP help you here:
Make an appointment
Depending upon your GP Practice’s local arrangements, there may be a number of ways that you can get help from the Practice Team to meet your needs. When you call to make an appointment, staff will explain the options available and make sure you are seen by the right person. If you need to see the GP, an appointment can be arranged. You may be able to arrange a same-day telephone call back from the GP if you have a pressing need. Find your local GP Practice here:
NHS Health Check
Unlike the Annual Health Check, which is for people with disabilities, the NHS Health Check is available for anyone between 40 and 74 without a pre-existing condition (e.g. stroke, heart disease, diabetes or kidney disease.) If you would like one, ask your GP Practice. These are designed to check for things like early signs of stroke, heart disease or Type 2 diabetes and should happen once every 5 years.
You can find out more about NHS health checks here: https://www.healthcheck.nhs.uk/.
To find out what happens at an NHS Health Check click here:
Look after your mental health needs
Enduring tiredness, stress and anxiety can wreak havoc on your emotional health and mental wellbeing. If you are concerned about changes in the way you have been thinking or feeling over the past few weeks or months, it is important to see your GP.
Symptoms may include:
- Loss of appetite
- Trouble sleeping, or sleeping too much
- Not enjoying life as much as before
- Feeling low, irritability or moody
- Feeling constantly anxious or worrying
- Finding it harder than usual to concentrate
- Thinking negative thoughts about yourself, and
- Seeing or hearing things that other people do not
Try not to worry about seeing your GP if you have been experiencing some of the symptoms listed above. Supporting patients with their mental health concerns is something doctors do regularly in their Practices.
Time with your GP is short, so make some notes before the appointment about the things you want to discuss. The doctor will ask you about your caring role to see if you are getting the support you need for both your loved one and you. He or she may prescribe some medication to reduce your anxiety and stress, or refer you for counselling or a specialist service. Some Practices have access to a counsellor or you could be referred to something called Improving Access to Psychological Therapies (IAPT) which provides evidence-based psychological therapies to people with anxiety disorders and depression where you can have sessions with a trained counsellor.
How to talk to your GP about your mental health
How to cope when supporting someone else
Talking Therapy IAPT
SANE offers emotional support and information to anyone affected by mental health problems.
- ïHelpline: http://www.sane.org.uk/what_we_do/support/helpline/
- ïTextcare: http://www.sane.org.uk/what_we_do/support/textcare/
- ïOnline support forum: http://www.sane.org.uk/what_we_do/support/supportforum/
Emergency planning for carers
It is not pleasant thinking about what might happen if for whatever reason you were suddenly unable to care for your loved one. We have covered emergency planning from the perspective of the person you care for. This section is just about you.
Contingency planning is something we cannot ignore and as they say it is better to be safe than sorry. So, what can you do now to prepare, just in case?
Getting a backup carer
You may have a family member or friend who would be able to look after your loved one if you cannot for whatever reason. Discuss what is involved with them and if they and your loved one are both comfortable with this ‘backup’ arrangement, give your stand-in all the information they will need relating to your loved one and their care needs. Make sure they know where the emergency plan and other care and support documents are kept.
Making a carer’s emergency plan
A Carer’s Emergency Plan is essential as a means to summarise and share all your key information in one document. The completed plan can be shared with your backup carer and others involved in providing replacement care and support. You can also place a copy prominently in your loved one’s home (i.e. where someone else is likely to find it) if you are not around. The NHS has a Carer’s Emergency Plan template that you can download and fill in. You can find out more at:
What to include in your emergency plan
If you prefer to develop your own version, here are topics to consider:
- name, address & contact details of yourself, the person you care for and next of kin;
- emergency contact details of people who can provide replacement care;
- your loved one’s medical condition(s) and support needs;
- any medication your loved one is taking and any ongoing treatment;
- any communication and mobility issues your loved one may have;
- details of any health professionals involved;
- key information about your loved one’s home including access;
- details of any Carer’s Emergency Plan registered with the local authority;
- details of legal arrangements (e.g. deputyship or power of attorney); and
- details of any advance care planning.
What if backup family care is not available?
In an emergency, if you can’t find anyone to provide backup care, the next option is to ring the Social Services Emergency Duty Team at your Local Authority.
Explain the situation and ask for help. If you have had a Carer’s Assessment before, or your loved one has had a Care Assessment, the assessor should have asked about emergencies and what arrangements are in place if you are ill or have an accident. If you are eligible, replacement care could be provided while you are incapacitated.
Find your local Council here: https://www.gov.uk/find-local-council.
It is possible that your GP or district nurse might be able to arrange temporary nursing care at short notice. This is called a Rapid Response Service in some areas of the UK. Referrals for this service have to be made through your loved one’s healthcare professionals.
Carer’s Emergency Card scheme
Your Council may have a Carer’s Emergency Card scheme, so have a look on your Council’s website if this is something you might be interested in. Once you have registered with the scheme, someone will help you draw up an emergency plan. You will be given a card to carry around with you which has telephone number to call and a unique identification number.
The Emergency Card can be kept in your purse or wallet, and will help to let other people, such as a first responder or paramedic, know that you are a carer and there is someone at home that relies on you. If anything happens to you, someone else can call the contact number and quote the identification number when asked. The people running the scheme can then access your emergency plan and make arrangements for replacement care. You can add the scheme’s details to your written emergency plan.
More information on emergency schemes for carers is available here: https://carers.org/article/emergency-schemes-carers.
‘In Case of Emergency’ cards
A range of commercially produced ‘In Case of Emergency’ (ICE) cards can be purchased from a company called Smart Technology Systems Limited. These cards can help emergency staff quickly find who to contact in an emergency. The credit card size ICE cards have clear ‘EMERGENCY’ text and a first aid logo on one side. On the card’s reverse, you can write in who should be contacted in the event of an accident or incident. You can then carry the card with you in your wallet or purse wherever you go. Go to the website for further information by clicking here: https://www.icecard.co.uk/.
Tip: You can also store your emergency contact numbers in your phone using the word ICE1, ICE2, and so on. This will mean that, if the emergency services are called to help you, they can check your phone and call the important people straightaway.
Carer’s Allowance and emergencies
If you are unable to care for your family member because you’re ill or in hospital you can still claim Carer’s Allowance for up to 12 weeks.
Build yourself a ‘circle of support’
Building and maintaining your own ‘safety net’ can help make sure that you too are supported. This will enable you to sustain your caring role and make sure that you do not end up running on empty and becoming unwell. This section suggests some ways you can build and maintain your own ‘circle of support’.
Develop and maintain a network of helpers
- Are there family members or friends that can help out with caring or running errands for you? If so, let them know how they can help.
- Ask your GP Practice about local carer support groups and services.
- Have you had a carer’s assessment in the past 12 months or a reassessment if your needs have changed? If not, contact your local authority about a new assessment.
- Check out your local authority website as they will have details of all local care and support services. Search for ‘carers support’ or similar.
Tip: Jointly is an app that makes caring for someone a little easier, less stressful and a lot more organised, by making communication and coordination between those who share the care as easy as a text message. Find out more here: https://www.jointlyapp.com/#welcome.
Seek out Respite Care
Respite Care is a way for you to have a break from caring. This might involve a paid carer coming in for a few hours a week or your loved one spending some time during the day or overnight somewhere nearby. If you have already been assessed by your local authority, respite should have been considered already. If not, or if your loved one’s needs have changed, contact your social services department again. You can find out more about carer breaks and respite care here: https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-breaks-and-respite-care/.
Speak with your employer
If you are working, continuing to work could be very important to maintain your wellbeing. If you are having difficulty managing your caring and work responsibilities, explore whether ﬂexible working is an option for you. Even if it is not feasible, it is important to let your employer know about your situation, so they are aware of the additional strain you’re under. You can find out more about flexible working here:
Ask about ‘Shared Lives’
Shared Lives is a scheme that links people who need help and support with approved families and carers who are willing and able to provide that help and support in their own home. People who use the service may have a learning disability, a physical disability, a mental health problem, or be unable to live independently because of their age. Shared Lives can be set up to provide day support, respite care, kinship, short-term or long-term care. Find out more about Shared Lives here: https://sharedlivesplus.org.uk/home/about-shared-lives.
To find your local scheme have a look on the Local Authorities’ website. Find out more here: https://www.gov.uk/find-local-council.
Find community support
No matter where you live, there will be a range of opportunities in your local community. These can provide much-needed social and practical contact, and support (e.g. carers groups, community and day centres, lunch clubs, charity run groups, church-based groups and volunteers offering related help).
You can find out more about your local organisations, carer support groups, social enterprises and sign up for their newsletters and information bulletins by searching the websites below for local information.
Find your local Council
Find services near you
Support where you live
Find Carers services in your area
How to cope with loneliness
Carers: help and support
Being in Control: Getting Personal Assistants (PAs)
Carer breaks and respite care
Getting a break
Hft: Family Carer Support Service
Free-phone helpline: 0808 801 0448 Tuesday to Thursday from 9am to 4pm.
(Leave a Voicemail if the help-line is busy out of hours. Call back within 7 working days).
Or email firstname.lastname@example.org (Response within seven working days)
SANE Mental Health Charity
Samaritans: A listening ear 24 hours a day
Counselling for carers
Talking therapy and counselling
Coping with loneliness
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