Supporting a client with a long-term condition: noticing change, medicines and knowing when to call

Your client knows their condition better than anyone. Someone who has lived with heart failure or COPD for years may be able to tell you which signs worry them and which they have learned to live with, and asking them directly is the respectful place to start. The family will know the rest, including what happened the last time things got worse.

Then watch for a week before you decide what is normal: how far your client walks before they stop for breath, how their ankles look morning and evening, how much they eat and drink, and how alert they are. Write it down, because a baseline you only remember is hard to compare against three weeks later.

This guide sits in our carer resources. Living with a long-term condition at home is the guide we have written for relatives, and it helps to know what they have read.

In heart failure, the heart cannot pump as well as it should and fluid can build up in the body. The British Heart Foundation says sudden weight gain may mean fluid is building up and needs treating, which is why heart failure teams ask people to weigh themselves and write it down. The amount of gain that means ringing the nurse is different for each person and belongs in their written plan, so ask for it rather than guessing. Heart failure at home explains the morning weigh from the family's side.

In COPD, Asthma + Lung UK describes a flare-up as symptoms that suddenly get worse: more breathless than usual, coughing more, a change in the colour of the phlegm. A self-management plan from the respiratory team says what to do, and some clients keep a rescue pack of steroid tablets or antibiotics at home. COPD and oxygen at home covers the plan, the rescue pack and the fire rules for home oxygen.

In diabetes, the change that cannot wait is a hypo, when blood sugar drops too low. The NHS lists confusion among the symptoms, alongside shaking, sweating and hunger, so a client on insulin or a tablet such as gliclazide who is suddenly muddled may be having one. Supporting a client with diabetes sets out the NHS steps for a hypo and a hyper in full.

In kidney disease, Kidney Care UK explains that too much fluid can make parts of the body swell and look puffy, and can cause breathlessness from fluid on the lungs. The kidney team sets any fluid allowance, and Kidney Care UK says foods such as soup, gravy, yoghurt, custard and jelly count towards it as well as drinks. If your client is on dialysis, the NHS lists signs round the fistula or catheter that need an urgent call.

Sudden confusion applies to every condition, and the NHS says to call 999 when it happens. An infection can also make any long-term condition worse, and sepsis signs in an older person explains what to look for.

A useful note says what you saw, gives a number where there is one, and compares it with what is usual for your client. It says what you did, at what time, and who you told. Use your client's own words where they told you something, such as "my chest feels tight".

NICE guideline NG67, on medicines support at home, says every occasion of medicines support should be recorded, including a reminder, and lists changes in a person's physical or mental health among the concerns a care worker should raise. So the medicines record and your notes on how your client seems belong together.

Keep the notes in your client's home, in one place, where your client, the family members they agree to, the district nurse and any carer covering a visit can read them. Your contract with each client on PrimeCarers asks you to keep what you learn about them confidential, except where the law requires it, for emergency medical care, or to give a substitute carer what they need to carry on safely. PrimeCarers does not keep or check care notes between you and your client, so the notes in the home are the only record there is.

If something in your notes makes you think your client is being harmed or neglected, for example medicines withheld or no food in the house between visits, that is a safeguarding concern. Safeguarding for self-employed carers explains how to report it to the council.

The further along you go, the more of the responsibility for a dose sits with you. NICE says a care worker should only give a medicine when there are clear instructions, usually on the dispensing label, and when they have been trained and assessed as competent to give it. Helping with medication as a carer covers the six rights of administration, the medicines record and what to do after a missed or wrong dose. Read it before you take on a client's medicines.

Insulin and other injections are never part of a visit by default. A registered nurse, usually the district nurse, has to decide the task can be delegated, train you on this client and their equipment, and sign you off in writing. A relative cannot hand it over, and some community nursing teams will not delegate to a carer who is not employed by a provider, which is a decision they are entitled to make.

Never start, stop or change a medicine, even when a weight, a reading or a symptom seems to call for it. That decision belongs to the prescriber, and NICE says care workers should point people to the prescriber or a pharmacist with clinical questions about medicines. A water tablet that seems to be making your client dizzy, or a dose that looks wrong for today, means a call to one of them. If your client has no written sick day rules for when they are ill and not eating, suggest they or the family ask the GP or pharmacist for them.

A client with several conditions can be on a long list of medicines from different teams. Several conditions and many medicines explains the medicines review a family can ask for.

Put what you agree in a message on PrimeCarers, so there is a written note of it for both of you, and keep the numbers in the home as well as on your phone.

Tell the family whenever you have made one of these calls, even if it ended well. If you ring 999, have their medicines or the list ready, and tell the paramedics what you saw and when it started. Your contract allows you to share what is needed for emergency medical care.

Working with the district nurseSection titled Working%20with%20the%20district%20nurse

District nurses are NHS community nurses who visit people at home who cannot easily get to a surgery. Their work includes dressing wounds, caring for catheters and giving injections, including insulin. The GP practice is the usual route to a referral, and each local team sets its own rules on who it visits.

If a district nurse visits your client, introduce yourself and ask how they would like to hear from you. Leave your notes where they can read them, and read theirs. They are the person most likely to train you for a delegated task, and the one to ring when a wound, a catheter or a pressure sore changes.

If your client goes into hospital, the visits you had booked stop for a while. The client contract says a visit cancelled by the client is payable in full except for unplanned hospitalisation, illness, or another reason you and the client agree, so a hospital admission is one of the exceptions. When a client cancels or goes into hospital explains what that means for your income. Looking after yourself as a paid carer covers rest, stress and where to get support.

So describe your experience on your profile in your own words: the conditions your clients have had, the plans you have worked to, and any task a nurse has trained you for and signed you off to do. Carers on PrimeCarers typically advertise £18 to £25 an hour with our fee included, and a £19 hour leaves you £15.58 after our 20% commission. When you are ready, you can register as a carer on PrimeCarers and set your own rate, or first see the carer jobs families have posted near you.