Keeping safe and warm with a terminal illness

The reasons for keeping our appliances, like boilers and ovens, safe might seem obvious. But your home being cold can have a serious impact on your health too.

You should be able to keep your home to a minimum of 18°C. Your main living area should be 21°C.

This is particularly important if you:

• Have health problems that mean you are more likely to have issues with your heart strokes or breathing problems if you aren’t warm enough.
• Use medical equipment that needs electricity.
• Are more vulnerable to infections which are more easily spread in the cold. A reliable source of water is also needed to stay clean.
• Would find it harder to recover from falls and injuries, which are more likely when your brain and your body is working hard to stay warm.
• May be dealing with stress, anxiety and mental health challenges relating to your illness which are made worse by cold, unsafe and unpleasant living conditions.

Common problems are:

• You cannot afford to pay your bills or are using less water, electricity, or heating so that you can.
• You are having problems communicating with providers, or you cannot understand your bills.
• Your supply or the appliances in your home are not working properly.
• Your provider is repairing the equipment that supplies your home, cutting off your supply for a short time.

If you are struggling to afford your energy bills, you are not alone. This might be because your income has gone down or because costs have gone up.

Here are some things you might be able to do to make it easier to pay your energy bills:

If an illness has changed how much you or your family are able to work, you may be able to claim new or different benefits. Claiming all the benefits you are able to may also help you get grants and other support schemes that help with energy costs.

Our information on Managing money when living with a terminal illness explains what types of benefits you may be able to claim and how.

You may also be able to apply for one-off or annual payments to help with energy costs, such as the Winter Fuel Payment or Warm Home Discount.

Local councils might offer help with bills under schemes called "welfare assistance" or "household support". Find your local council to see what they offer.

Benefits can be complicated, and it can be hard to understand what you can apply for and how. If you need some support:

• See Citizens Advice information on help paying energy bills.
• National Energy Action’s Helpline can also offer advice if you call 0800 304 7159.

You may be able to apply for grants or one-off payments. These are sometimes offered by energy companies or charities. They might be given based on your income, where you live or a job you have done in the past.

• See Citizens Advice information on Grants and benefits to help you pay your energy bills.
• Find out what you're eligible for by using Turn2Us Grant Search.

If you were not born in the UK, the types of support you may not be able to apply for some of the above support.

• Visit Turn2Us’s information for migrants.

You should not have to put your health at risk to lower your energy bills. We know that many people are having to make very difficult decisions to keep their energy bills affordable.

There may be changes you can make to how you use your energy and water that could make your bills lower, without impacting your comfort or health.

Get reliable advice on ways to save energy. Make sure the changes you are making are ones that will make the most difference to your bills.

• Book a free home visit from Groundwork’s Green Doctor.
• Money Helper’s online information How to reduce your energy bills.
• Easy Read information from Mencap on Ideas to save energy.

Some people are able to apply for grants and discounts to improve how your home uses energy. For example, insulation to help your home stay warm for longer, or a boiler that uses less gas.

Remember that changes to your home may take a long time to be finished. It could also be quite disruptive to your life. This may not be a realistic step if you are very unwell or expect to become unwell quickly.

Information on help with home improvements:

• energy grants for your home from government
• energy grants for your home from energy companies
• home Energy Scotland Funding Finder

You may be able to save money by changing your tariff or your energy provider. Most people cannot choose who provides their water.

• Which? have advice on How to switch energy supplier.
• If you’re in Northern Ireland, the Consumer Council can help you compare energy prices.
• Citizens Advice Consumer Service can help you decide if a deal you are being offered will save you money.

It is not unusual for people to feel they need to borrow money or use credit cards at the end of their life. This might be because their income has gone down, or costs related to your health have gone up.

If you feel you need to turn to borrowing to pay bills such as energy and water bills, you are not alone. However, it is not a good idea to borrow money to pay for essential items if you can help it.

Your energy provider must, by law, support people who are vulnerable, including if you are unwell or near the end of your life. They should offer you a payment plan, advice and signpost you to other financial schemes, assistance and support.

We know having debt can be really worrying and stressful for people, especially at the end of their life. If you are still worried, take a look at our information on managing money when you have a terminal illness for more advice on dealing with debt.

It is unlikely that your supplier will cut off your gas, energy or electricity supply. If you have unpaid bills, your supplier will usually offer you a pre-payment meter or payment plan instead.

Before agreeing to a pre-payment meter, keep in mind that this can mean your supply being cut off in the future if you run out of credit. So, think about this decision very carefully, especially if you have medical equipment or are very vulnerable to the cold.

Your water supply cannot legally be cut off if you do not pay.

Citizens Advice have information on disconnections for England, Scotland and Wales. For Northern Ireland, see NI Direct.

Letters, phone calls and other messages from your energy provider could be important for you to keep your supply working or to save money.

You may sometimes have important information to share with them.

But when you’re experiencing symptoms such as fatigue and pain, this might become difficult. You might miss details or find it hard to get through to customer services when you need to.

Your illness means you should be able to join a priority list. See How do I sign up for a priority list?

• 24 hour contact number - You can get information to help you contact your providers quickly if you have a problem with your supply that could affect your health.

• Letters in accessible formats - They can also offer letters in large print, textphone, audio or a different language.

• Password - You can set up a password, so that you can always be sure you're talking to someone from the energy provider.

• Nominated contact - Tell the energy provider to contact someone else to deal with anything to do with energy or water supply, such as a friend, family member, carer or anyone you trust.

Power cuts or planned outages could be serious for someone at the end of their life.

So it is important that you are on a priority list, see How do I sign up for a priority list?

Sometimes energy suppliers have to cut off supply for a short time to carry out repairs. If you're on a priority list, they'll let you know before they do this, so you can plan ahead.

If you use medical equipment/aids which use electricity or water, you may be able to get portable generators, alternative heating and cooking appliances or bottled water when your supply is off.

To make sure you are on your energy provider’s priority list, you need to contact them directly. Each provider has a different form, so the first step is making sure you know who your provider is. This is not the same as the company you pay your bills to.

England, Scotland and Wales

If you’re in England, Scotland or Wales, you can find out who your provider is on the Priority Services Register website. Enter your postcode and you’ll be redirected to the right page to send them your application.

Northern Ireland

Follow the steps for finding your provider on the Ofgem website. Then go to the provider's website to find out how to apply for their priority list.

In Northern Ireland, you can also be added to the Customer Care Register for NI Water.

This process can feel complicated if you are not used to doing things online. You may want to find an adviser to help you through it.

For people who use oil for their heating, there is the Cold Weather Priority Scheme. Not all oil providers are part of this scheme. You, or someone in your home, must be 75 or older to be part of it. Speak to your oil provider to see if you can be added to their priority list.

Looking after a house when you’re unwell can be hard, even with help. Sometimes when appliances relating to energy and water get worn out or broken, they can become dangerous.

Make sure you use reliable information and advice on how to keep yourself safe, such as:

You own your home

• British Gas: How safe is my boiler?
• Electrical Safety First: Safety around the home

You rent your home

If you are renting, you may be able to ask your landlord to organise repairs and maintenance.

• Take a look at Shelter’s information on what landlords should be doing to keep your home safe.

Appliances that burn gas, wood, oil or coal may give off carbon monoxide if they are broken or not fitted properly. This includes ovens, boilers, heaters, open fires, wood burners and more.

Carbon monoxide is a poisonous gas that can make you seriously ill. You cannot smell it.

Symptoms of carbon monoxide poisoning

If you have carbon monoxide poisoning, you might feel:

• dizzy
• sick (including actually being sick)
• weak
• confused
• chest and muscle pain
• shortness of breath
• headache

The NHS has information on carbon monoxide poisoning.

Signs of a carbon monoxide leak

If you have a carbon monoxide leak you might see:

• a yellow or orange flame on a gas appliance which should be blue
• flames that burn weakly, slowly or go out, including the pilot light on your boiler
• yellow or brown sooty marks on an appliance
• lots of condensation in a room with the appliance

If you think you have a carbon monoxide leak, get everyone out of the house straight away and call the National Gas Emergency Helpline. This is a different number depending on which part of the UK you live in. See What to do in a gas emergency from the Gas Safe Register.

Carbon monoxide and terminal illnesses

You will likely already have health issues which make you more at risk because of carbon monoxide leaks.

• It may be harder for you to notice the signs of carbon monoxide poisoning if you are already experiencing some of the symptoms.
• If you suspect that you have a carbon monoxide leak it is important to get outside, open windows and turn off appliances. This might not be easy to do if you are less able to move around.

Your home can become damp or mouldy for different reasons:

• cold temperatures inside that cause condensation
• water coming up from the ground
• water coming in from another source, such as a leaking gutter, pipe or roof

Damp and mould can cause problems with your breathing, your eyes and your skin. You may be more likely to get viruses and bacterial infections. It can also be stressful and upsetting when parts of your home or belongings are damaged.

Children and people at the end of their life are at a higher risk of getting health problems related to damp.

If you have damp and mould in your home:

• See National Energy Action’s advice on damp and mould.
• If you rent your home, Citizen’s Advice have information on damp and mould here.

Hiring qualified and trusted gas engineers, plumbers and electricians is important to keeping your home safe. If someone does not have the right training, they could make mistakes that put you and the people who live with you in danger.

• Find a gas engineer on the Gas safe register.
• Find a registered electrician from Electrical Safety First.
• How to find a good plumber from Which?
• Find a technician for your open fire or wood burner (including chimney sweeps) from Hetas.
• Find an oil technician from OFTEC.