Carers handbook contents
- Getting started
- Self Help and Community Support
- Equipment and technology
- Money Matters
- Carer’s Health & Wellbeing
- Carers in Paid Employment
- Talking with Professionals
- Assessments – Asking for Help
- Care Providers and Care Costs
- Planning Ahead
- Children and Young People with Disabilities
- Young Carers and Young Adult Carers
Planning for the Unexpected and CERS
Planning for the Unexpected
If someone relies on you to provide care and support it is advisable to think ahead and draw up a contingency plan should replacement care be needed unexpectedly. Having a plan can help reduce anxiety and also gives the opportunity to think if there are trusted people you could ask to provide back-up care in an emergency or people you could tell in advance what your wishes would be for dealing with an emergency. It also gives you chance to prepare ahead and think about the information anyone providing replacement care, needs to know.
If you have a pet think about their care too, they may stay in the family home but maybe a friend will be willing to take responsibility for their care needs e.g. feeding, dog walking. On the other hand, there may be a friend or member of the extended family who can take the pet in temporarily.
Record this information in a contingency plan and keep it where it will be found easily. You may want to make a few copies to be kept in different places and/or by different people who support you with the caring role. See below for a suggestion of what should be included in your plan for the unexpected;
Name and contact details for;
- You and the person you care for
- Back up carer if there is one
- Next of kin
- GP, pharmacy and other health care professionals
- For children in the family
- Contact details of any other relatives who need to be informed
- Details of who children under 18 will need to stay with or who will come to stay with them temporarily
- School contact details name and contact details of school lead
- medication the person you look after is taking and where it is stored, (this information needs to be frequently reviewed and updated)
- details of any allergies
- any ongoing treatment any care and support services they receive
- any continence products needed and who supplies them
- any mobility challenges and mobility aids such as a wheelchair or hoist
- Likes and dislikes, favourite things which bring comfort whether that be a favourite item, music or hobby for example.
- Provide details of familiar routines – helpful so that the person you care for feels safe and less anxious.
- any triggers which people need to be aware of which negatively affect the person you care for
- how to access the property is there a key safe or give details of anyone who has a spare key
- any key information about the person’s home, for example how to turn the central heating on
- details of any carer’s emergency plan that been registered with the local authority or carer organisation and the phone number to call (see below)
- any Power of Attorney, Deputyship or Guardianship that’s in place
- any advance care plan that has been made.
Some charities have provided templates or advice to help you keep a record of important information such as;
Carers UK have an interactive online tool to identify the information to include in your plan https://carersdigital.org/mybackup/
Alzheimer’s Society ‘This is Me’ https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/this_is_me.pdf
Southend University Hospital, Hospital Passport suitable for adults with learning difficulties, http://www.southend.nhs.uk/media/117955/ld_hospital_passport.pdf
Apps such as Carers UK ‘Jointly’ can also be used to keep all important information in one place and shared by the people within your ‘care circle’ https://jointlyapp.com/
The local authority social services may be able to advise you on how they would provide emergency care in the event of no other support being available.
In Case of Emergency (ICE)
ICE (In Case of Emergency) is a campaign started by a paramedic to help emergency staff quickly find who to contact. You can store the word ICE in your mobile phone address book with the number of the person you’d like people to contact, for example your back-up carer. If something happens to you, ambulance, police or hospital staff will look for the word ICE in your phone’s address book and call that person. If your phone has a lock with a password, you can put ICE information on your phone’s lock screen. Your phone instruction manual will have information about how to do this.
Another aspect to consider would be to ensure the whole family know what to do if there is a fire at home. Most local fire and rescue services offer free of charge Home Fire Safety Checks. You may be eligible for free smoke alarms to be fitted where required. You will not be sold anything. For more information and to book your free home safety check contact the Essex County Fire & Rescue Service website or call 0300 303 0088. More details about equipment and technology to keep you safe can be found in this e-handbook in the section Equipment and Technology.
Carers Emergency Respite Scheme (CERS)
Southend Carers Hub in partnership with the homecare provider Ashley Care deliver the Carers Emergency Respite Scheme (CERS) which can provide replacement care in an emergency for up to 48 hours (72hours on bank holidays). Adult Carers can register on this scheme if they care for an adult living in the Southend borough. If under 18’s reside with you, they are not covered by this scheme. If you are an eligible carer Southend Carers Hub can help you draw up an emergency plan and register on the scheme. Contact Southend Carers Hub 01702 393933, firstname.lastname@example.org for further details.
Lasting Power of Attorney (LPA)
Lasting Power of Attorney is a legal document which must be completed whilst you have capacity to make decisions yourself. It gives you control to appoint the person/people you want to act on your behalf should you have an accident or illness which leaves you, even temporarily, unable to make decisions for yourself. The person/people you appoint are called attorneys and are legally bound to always act in your best interests.
In England and Wales there are two types of Lasting Power of Attorney and you could choose to set up just one or both;
- Property and financial affairs lasting power of attorney. This lets someone manage your financial affairs including bank accounts, savings, tax affairs and buying and selling property.
- Health and welfare lasting power of attorney. This lets someone make decisions about your health, care and welfare for example making decisions about the medical treatment you receive and choosing where you live and who cares for you.
After the Lasting Power of Attorney for Health and Welfare is registered decisions about your health care will only be made by your attorney/s if you lose the capacity to make and express your wishes yourself.
After the Lasting Power of Attorney for property and financial affairs is registered you can choose for these decisions to be made by your attorney(s) even when you are still able to make decisions for yourself. You might choose to do this for convenience or to delegate some of the work and stress. Otherwise you keep full control of your property and financial affairs after the Lasting Power of Attorney document is registered and the attorney/s would only make decisions on your behalf should you lose the capacity to make them yourself.
Further details on Lasting Power of Attorney
You should choose at least one replacement attorney who would take over if your attorney died or could no longer act for you. Attorneys must be at least 18 years old, have mental capacity to make decisions. They must not be bankrupt or subject to a debt relief order.
While you still have mental capacity you can make changes to the Lasting Power of Attorney even after it has been registered.
Lasting Power of Attorney (LPA) replaced Enduring Power of Attorney (EPA) on 1st October 2007. EPAs signed before that date are still valid and can be registered.
Further information is on the government website: Lasting Power of Attorney
Completing the form
Help and guidance is available from the Office of the Public Guardian (OPG) from a telephone helpline, in paper format and online LPA guidance, this includes an explanation in plain English of any legal terms and details of who needs to sign the form and who can witness the signatures.
The Lasting Power of Attorney documents can be completed using the online service LPA online service or by downloading the forms or requesting the paper forms to be posted to you. The online service will require you to print out the completed form to get all the signatures required.
The LPA is registered by the Office of the Public Guardian (OPG).
Office of the Public Guardian
PO Box 16185
B2 2WH Tel. no. 0300 456 0300 email@example.com
Register your LPA
- It is important to register the LPA as soon as you have completed it, any mistakes will be identified and can be corrected while you (the donor) have mental capacity.
- It takes 8 -10 weeks to register an LPA.
- If you lose mental capacity before the LPA is registered your trusted people cannot make decisions on your behalf until the registration is complete or they might have to apply to the Court of Protection to get an urgent or emergency court order.
- Registering the LPA does not mean it will be used but it will be available should it be needed.
- It costs £82 (2019/20) to register each LPA unless you get a reduction or exemption.
This means it costs £164 to register both property and financial affairs LPA and the health and welfare LPA.
- You can apply for a reduction in the registration fee if you earn less than £12,000. You might also be able to apply for an exemption if receive certain benefits, such as Income Support.
Refund of part of the fee
You can get part of your application fee back if you applied to register a power of attorney from 1 April 2013 to 31 March 2017. You must claim your refund by 1 February 2021. More details are available from the link https://www.gov.uk/power-of-attorney-refund
Court of Protection Deputy
If you do not have mental capacity and do not have an LPA in place, someone will need to apply to the Court of Protection to be appointed deputy, to manage affairs on your behalf. The Office of the Public Guardian (OPG) is responsible for ensuring that Deputies act in the best interests of the person who lacks capacity and follow the directions of the Court.
The Mental Capacity Act (MCA) is designed to protect and empower people who may lack the mental capacity to make their own decisions about their care and treatment. It applies to people aged 16 and over. It is assumed a person has capacity to make a decision themselves, unless it’s proved otherwise. Wherever possible, help is given, so the person can make their own decisions
The Mental Capacity Act says a person is unable to make a decision if they can’t:
- understand the information relevant to the decision
- retain that information
- use or weigh up that information as part of the process of making the decision.
A person may have capacity to make some decisions and not others. Their mental capacity is not governed by a diagnosis. More details can be found on the NHS website; Understanding Mental Capacity
Acting as Deputy – Details
You can apply to be a deputy if you’re 18 or over. Deputies are usually close relatives or friends of the person who needs help making decisions. The level of support and supervision the OPG allocates to a Deputy is decided after carrying out an assessment of the individual circumstances of the case.
Supervision involves producing an annual report each year explaining the decisions you have made as deputy. This can be completed online or as a paper copy.
Some people are paid to act as deputies, for example accountants, solicitors or representatives of the local authority.
More information can be found on the government website: Court of Protection Deputy
How much does it cost?
The fees involved in becoming a deputy are; an application fee, an annual supervision fee and an assessment fee (if you are a new deputy).
The fees in 2018/19 are;
- £385 application fee (for each type of deputy)
- An annual supervision fee; £35 is the fee for minimal level supervision which applies to some property and affairs deputies managing less than £21,000 and £320 is the general supervision fee.
- £100 assessment fee if you are a new deputy. New deputies get a ‘general’ level of supervision for their first year.
- You’ll also need to pay £500 if the court decides your case needs a hearing. The court will tell you when you need to pay this.
- Full details of fees can be found on the government website; https://www.gov.uk/become-deputy/fees
- You may be eligible for help with the fees including possible exemption; details are on the government website Help with Deputy Fees
Wills and Trusts
Carers may worry about what will happen to the person they care for if they were to die or be unable to continue their caring role. A ‘loved one’ receiving care may worry about making future provision for family and friends. Being aware of the options and making people aware of your wishes can help give peace of mind both to the carer and cared for.
Making a Will
It is important to make a Will for a number of reasons including;
- To be clear how you wish your property and belongings, including items of sentimental value, to be shared between people who you love and/or organisations and groups you wish to support.
- People close to you may not be your legal next of kin which could leave relatives and friends with disputes and arguments, unless your wishes are written down and legally binding.
If you have a child or adult with a learning disability, there are additional things to think about when making a Will, to safeguard their future including setting up a trust fund.
Discretionary Trust Funds and Disability Trust Funds
Trust funds need trustees to manage them and if you do not have anyone who can do this you may need to look at it being managed by a company such as a charitable trust.
Things to consider;
- If you leave money directly to someone who receives a means tested benefit their benefit may stop.
- If you leave property to a person unable to take on this responsibility for themselves, it may result in someone becoming the deputy to make decisions on their behalf. This is done through the courts and is a costly process.
- If you leave money to a sibling on the proviso they look after their brother or sister, if the sibling gets divorced or gets into debt the money left to them will be taken into account in any settlement and will therefore not be used for the purpose you intended.
- If you set up a discretionary trust fund you need to have a letter of wishes detailing how the fund should be run and the likes and dislikes of the person, the money is being held in trust for.
For more information see the Mencap website: Wills and Trusts – Mencap
It can be difficult to have conversations with family and friends about end of life and yet the earlier you talk the easier it is emotionally and practically for everyone. Families who have discussed and planned for the end of life often find they are more content; it can take away some fear of the future and it can reassure the carer that they know what their ‘loved one’ would want if ever they have to make decisions under pressure.
One way of opening up the subject can be to ask your loved one who they would like you to contact if they become seriously ill. It gives them an opportunity to talk about their end of life wishes if they choose to take it. More guidance on having difficult conversations can be found on the Independent age website Difficult Conversations
Five important things to discuss are;
- Legal and financial matters – this includes making a Will
- Organ donation
- End of Life care
- How you want to be remembered
- Funeral Plans
Organ donation means giving part of your body to someone else who needs it. Anyone can register to donate their organs and tissue when they die, regardless of their age or medical conditions. To ensure that all donated organs are safe, the donor’s medical and lifestyle history is assessed at the time of donation.
Thousands of lives in the UK are saved each year by receiving a donated organ. To become an organ donor after your death, you should:
Join the Organ Donor Register and tell your family and friends that you have joined the register and want to be a donor so they can support your decision. Your family’s support is needed for an organ donation to go ahead. Every year, organs go to waste because relatives aren’t sure what their loved one wanted.
The law is being changed to an ‘opt out’ system in Spring 2020. This will help save and improve more lives. This means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.
More information on organ donation including the changes to the law can be found on the NHS website Organ donation NHS
Donating your body to medical science
If you wish to donate your body to medical science written and witnessed consent must be given prior to your death this is governed by the Human Tissue Act 2004.
Consent cannot be given by anyone else after your death. A consent form can be obtained from your local medical school and a copy should be kept with your Will. You should also inform your family, close friends, and GP that you wish to donate your body.
Body donor cards work in the same way as organ donor cards. They represent your decision and wish to become a body donor and can be carried in your purse or wallet. You can also include the contact details of the medical school you have registered with. This will make it easier for your family to contact the right medical school and make suitable arrangements as soon as possible.
It is important to note a body donor card does not replace the consent process. A consent form must be completed and registered with a medical school.
More details can be obtained from the Human Tissue Authority. https://www.hta.gov.uk/donating-your-body
End of Life Care
It’s important to discuss the kind of care you would like towards the end of your life with your relatives and ‘loved ones’. Your wishes and preferences could include; where you would like to be cared for, who you would like to be with you, religious and spiritual beliefs you want respected in your care, your thoughts on different types of treatment you might be offered and also practical issues such as who will look after your pet.
It may not always be possible to remain at home to die; the home may be unsuitable, the primary carer may be too infirm and other relatives unable to give the appropriate care. Health professionals help people who are dying and their families to choose the place to receive the best care under the circumstances. This could be at home, in a hospice (day care or as an inpatient), hospital or care home. Southend Carers have an end of life support service offering emotional support and respite to give the main carer much needed breaks.
Advance Care Planning can be so helpful to the people close to you, to know what your wishes are.
If you wish to refuse certain medical treatment this must be formally written down, signed and dated. Two legal documents regarding end of life decisions are the Advance Statement and an Advance Decision.
Details which can be written in an Advance Statement are;
- where you would like to be cared for (e.g. at home, hospital or nursing home)
- personal preferences such as how you would like religious or other beliefs reflected in your care, personal preferences including; music preferences, whether you want lights left on when you sleep
- practical issues such as who will look after your pet.
More details can be found on the NHS website; Making an Advance Statement
An Advance Decision to Refuse Treatment (ADRT) also called a Living Will is a record of your wishes regarding medical treatment. It is wise to discuss the care options and implications with a health professional, this will help you make your wishes clear and unambiguous in any Advance Decision document.
What does the Advance Decision to refuse treatment include?
- It would state if there is any life prolonging treatment you would like to refuse.
- It can express your wishes on your death such as whether you would want your body to be given for organ donation.
- An advance decision is legally binding as long as it has been drawn up correctly.
- It can only be made by an adult 18 and over who has Mental Capacity.
- It is important that all people involved in your care and your family are aware of any Advance Decision.
- Medical professionals will need to be absolutely certain that it is your most recent decision. Advance Decisions will therefore often be reconsidered as your illness progresses.
How you would like to be remembered
What would you like people to know before you die? Are there any messages you would like to leave for those you love? Perhaps you would like to create a “memory box” or a video for your loved ones. Make time to do this is while you are still able.
It can be such a help to family and friends if you have made known what you would want the plans for your funeral to be.
Arguments and heartache can be avoided by making decisions clear such as;
- whether you want a cremation or burial,
- where you would like the service to take place
- any specific choices of music, clothes, charities to support or flowers and type of wake.
- This information can be recorded in the leaflet My Funeral Wishes downloadable from the Dying Matters website; https://www.dyingmatters.org/page/my-funeral-wishes
There is a wider variety of funeral options available than you may realise, and there are no legal requirements for the form of a funeral ceremony.
Types of funeral are;
- a traditional funeral taking place in a crematorium or place of worship
- humanist and civic funerals
- a woodland burial
- a DIY funeral
- a burial at sea
A funeral plan helps you to plan and pay towards a funeral in advance.
Financial Planning in Later Life
Society of Later Life Advisers SOLLA helps people and their families in finding trusted accredited financial advisers who understand financial needs in later life.
Financial advice can provide the information you need to make decisions such as; planning for future care fees and considering equity release.
SOLLA helps you to find an adviser who is local.
The Society SOLLA was established in 2008 as a not for profit organisation dedicated to higher standards and accessibility to regulated financial advice for older people and their families. There are no shareholders and any profit is used to sustain the Society and its objectives.
The Society of Later Life Advisers is committed to:
- Promoting and raising awareness amongst people, their families and professional advisers of financial issues faced in retirement and later life
- Building relationships with statutory and voluntary agencies, charities, housing and social care providers, financial services firms and those organisations who are involved in the financial wellbeing of those in later life
- Raising the standards of practice of those engaged in advising older people by promoting the highest levels of professionalism in financial advice
- Identifying and developing best practice by the provision of high quality training and the distribution of the latest information and know how in later life issues
- Acting as a source of technical excellence for later life advisers
- Actively inputting into legislative and policy changes and contributing to debates on policy
Doreen and Stan were in their seventies when they completed and registered Power of Attorney forms. They completed the forms with the help of their son Jack and a close family friend, Jack was their attorney and their grandson deputy attorney. Doreen and Stan let all the family know, whatever happened in the future they wanted to stay in their own home for as long as they were able. Doreen and Stan continued to live independently and in charge of all their own finances for more than 10 years. Sadly, Stan died 2 months after his 86th birthday. Doreen aged 87, was no longer able to manage on her own. Jack was able take the Power of Attorney registration to Doreen’s bank and to a homecare provider. Jack managed all the bills and banking, acting as his mother’s attorney and arranged for homecare to visit twice a day to make sure his mother was safe and well looked after in her own home.