Working with professionals

When you are looking after someone with cancer, you will get to know lots of different health and social care professionals. A clinical nurse specialist will usually be the main point of contact for you and the person you care for. They are called the key worker.

It’s important to build a good relationship with the professionals. Give them as much information as you can about the person you’re caring for (with their consent), and how the situation is affecting you. You can ask them questions too. But they may not always be able to share information with you, if the person you’re caring for has not given them permission.

Ask the key worker whether a care plan has been organised for the person you care for. The plan should include details about what support they will get after they have left hospital. It’s important you understand what help might be available if you’re going to be caring for them at home.

Working with health and social professionals

From the beginning of your caring experience, you may be in contact with a number of health and social care professionals.

These could include:

  • a GP
  • an oncologist (a doctor who specialises in cancer)
  • a clinical nurse specialist (who specialises in a particular area of health, such as cancer, or in a specific cancer type)
  • a district nurse (who visits people at home)
  • social workers (who support vulnerable people in society and direct them to services to help improve their welfare)
  • physiotherapists (who help people become more mobile after an illness or injury)
  • occupational therapists (who help people to work or do daily tasks).

There will often be one person who is the main point of contact for you and the person you care for. Professionals may call this person a key worker. This is usually a clinical nurse specialist.

Communicating and organising

Your relationship with the professionals should work as a partnership. Sometimes you may have to take the initiative to make this happen. By working together, you and the person you care for will get the best from their knowledge and skills.

Health and social care professionals, including the key worker, are there for you too. You can ask them questions about the cancer and your caring role. But there may be times when they can’t share information with you about the person you care for, particularly if the person has asked them not to. This also applies to professionals sharing information about you with the person you care for.

Remember that professionals don’t always have all the answers. It may help to try to find out as much as you can about each professional’s role and how they work together. Then you can ask the right person straight away when you have a question or problem.

It’s good to have realistic expectations about what they can do for you and the person you’re caring for. If you give them as much information as you can about the person you care for and how their situation is affecting you, they will be able to help you both.

It may also help to recognise that professionals can be emotionally affected. This can happen if they work with the person you care for and you, for a long time.

Practical tips to help you work with professionals

  • Make sure you have phone numbers for the GP, key worker, district nurse, cancer ward and local hospice. Save these into your home and mobile phones, and note down the name of receptionists.
  • Before going to any appointments, ask the person you are caring for if they have any questions for the healthcare professional. And think about what you want to ask. Write these down so you don’t forget.
  • Keep a notebook with details of every visit to the hospital or from a professional. Try using a file to keep all leaflets, information sheets and appointment details together in one place.
  • Keep a record of blood tests or x-rays and their results. This will make it easier to question any mistakes and may help if you need medical assistance out of hours.
  • Make sure your GP knows you are caring for someone. Even if you and the person you care for are registered at the same practice, they may not know you are a carer.
  • Be prepared if the person you are caring for is coming home from hospital. Make sure you have all the information you need to cope at home. We have information about the people and services available to help you.

Out-of-hours services

It can be very worrying if you need to contact professionals when services are closed in the evenings or at weekends. Sometimes carers find they have to do healthcare tasks themselves during these periods.

The out-of-hours period generally runs from 5pm–8am on weekdays, and all day at the weekends and on bank holidays. But under recent UK government plans, some services may begin to open for longer and on more days in certain areas.

There are different services across the UK that can help you during out-of-hours periods:

  • In England, you can call the NHS 111 service out of hours for a telephone health assessment. Just call 111 free of charge from any phone. You could also use the NHS Choices free symptom checker online.
  • In Scotland, call NHS 24 on 08454 24 24 24.
  • In Wales, call NHS Direct on 0845 46 47.
  • In Northern Ireland, contact numbers vary but are listed on the nidirect website.

You may not be sure about what signs, symptoms or situations to look out for. You could ask your GP or key worker in advance about what kinds of things should cause concern. Check what the out-of-hours services are in your area and save any useful phone numbers.

If the condition of the person you care for, their symptoms or needs change, contact the hospital or your key worker immediately. If it’s left until near the weekend, it will be more difficult to sort out and their condition may get worse.

Practical tips to help out of hours

  • Try to think of any problems that may come up out of hours. Discuss these with professionals during the working day and plan what you should do in each situation.
  • Have a plan prepared in case you can’t look after the person you care for at short notice, for example if you’re ill. It’s a good idea to discuss this with social services and a local carers’ centre if you have one.

If the person you care for needs urgent medical help

If the situation is urgent, call your key worker or the hospital where they were last looked after for immediate advice. If you need to go to accident and emergency (A&E), bring any information you think may help. This might be a patient diary or treatment summary record.

Care plans

Everyone with a long-term condition should have a care plan if they want one. A care plan is an agreement between the person who is ill and the health or social care professionals. It describes how professionals plan to care for them and what they can do to manage their day-to-day health themselves.

Ask the key worker or oncologist if a care plan has been organised for the person you care for. The plan should include details about support they will get following treatment or after leaving hospital. Make sure you are clear about what support is available, and ask to have the details explained to you.

If you are offered help with personal care, ask whether you have to pay. These services are not always free.

Being assertive

As a carer, being assertive is really important. Being assertive means giving your point of view and being confident about asking for help.

It’s important to be assertive with family and friends. Try to tell people when it’s not a good time to visit. Seeing the wrong person at the wrong time could make the person you care for feel worse.

You can also be assertive with the professionals you meet. Try to learn as much as you can about cancer care. If you don’t understand something, ask for it to be described in more basic terms. You can’t be expected to understand medical jargon.

If you’re unhappy with the treatment the person you care for is receiving, tell your key worker or a relevant health professional. We have more information about asking professionals questions to help you get the best from your cancer services. You can read questions people can ask professionals at any time during their cancer experience. Each question is followed by a description of what should happen according to national guidelines.

Patients are given copies of any medical notes and letters about their health and care. You could ask for copies of these but you’ll need the person’s permission first.

Sharing information and confidentiality

Professionals may prefer to only share information with relatives or someone nominated by the person you care for. The Data Protection Act 1998 requires any organisation, corporation or governmental body that collects personal information to handle it safely. If the person you care for would like professionals to share information with you, they should let them know as early as possible. You should also let their healthcare team know that you are the carer.