Working with professionals when you're caring for someone with cancer

6 minute read time.

Here's our first installment of advice that has been written by carers of people cancer. We'll be adding more over the next few days. It's been taken from our booklet Hello, and how are you - a guide for carers, by carers.

You can download the full booklet and find out more about how Macmillan can help carers here. You can also join our carers group to connect with other carers and to share support and advice.

If you have any feedback about this information, please comment on this blog post.

 

Working with professionals

‘Working with professionals is about sharing the care. We both have a role to play.’ 
Jean

When someone close to you is living with cancer, you are likely to come into contact with a number of health and social care professionals. These could include social workers, physiotherapists and occupational therapists, as well as your GP, oncologist and district nurse. For us, it was helpful to develop our relationships with these professionals as a partnership.

Sometimes we found we had to take the initiative to make this happen. Working together as a team will help you and the patient get the best from the knowledge and skills they can offer.

Remember that health professionals don’t always have all the answers. Try to find out as much as you can about each individual’s role.

This will help you to turn to the right person straight away when you have a question or problem. It will also give you realistic expectations about what they can do for you and the person you are caring for.

If you can give them as much up-to-date information as you can about both the patient’s situation and how it is affecting you, they will be better equipped to help you both.

Remember that the professionals are there for you as well as the patient. But there may be times when they can’t share information with you about the patient or with the patient about you, particularly if you or the patient have asked them not to. 

This advice about working with professionals covers:

  • Organising
  • Getting hold of professionals in an emergency or ‘out of hours’
  • Communication between different health professionals
  • Follow-up care
  • Support for professionals
  • Predicting the outcome (prognosis)
  • Being assertive


 Organising

Increasingly there will be one person who is the main point of contact for you and the patient – professionals may call this person your ‘key worker’.

Programme all useful telephone numbers (such as your district nurse, GP, cancer ward and local hospice) into your home and mobile phones, and note down the name of receptionists.

Keep a notebook with details of every visit to hospital or from any health or social care professional at home.

Use a file to keep all leaflets, information sheets, appointment details and other useful information together in one place.

It might also be useful to keep a record of blood test or x-ray appointments and their results. This will make it easier to query any oversights.

Make sure your GP knows you are caring for someone. Tell them this even if you and the patient are registered at the same practice.

Before going to an appointment with a health professional, talk to the person you are caring for about what questions they want to ask and what you want to ask. Write it down so you don’t forget.


Getting hold of professionals in an emergency or ‘out of hours’

Make sure you know the ‘out of hours’ arrangements for your key health professionals. Check with them who you should contact in case of an emergency, and how to do this. It may be best to avoid going to Accident and Emergency unless you are advised to do so.

Make sure the telephone numbers you need are always to hand – either programmed into your phone or taped to the fridge.

Call the cancer ward at the hospital if you are worried. If they aren’t able to help, try your local hospice.

If you are concerned about a developing condition, symptoms or changes, don’t let it go beyond the middle of the week without alerting the relevant health professional. If it is left until near the weekend, it will be more difficult to sort out. Only a small proportion of the country has ‘out of hours’ support services at the moment.

Try to anticipate problems that may come up ‘out of hours’ so you can discuss them with health professionals during the working day. We also found it helpful to have a plan in case you can’t care for the patient at short notice, eg if you are ill. We discussed this with Social Services and the local carers’ centre who provided emergency contact numbers for the patient.


Communication between different health professionals

Note down the names of all the professionals, and their secretaries where possible, involved in the patient’s care.

Try to find out how they work together to keep each other informed and up-to-date. For example, how often do they meet and when?

Although the health professionals will keep the patient’s medical records, it’s helpful to have your own notes of appointments, conversations and other important information, as it provides a personal record and helps you keep track of what’s been agreed. Keep records of the drugs the patient is taking so you can double-check prescriptions are correct. You can also monitor and note down how the patient is feeling, for example, between each chemotherapy session.


Follow-up care

Ask the health professionals what aftercare has been organised for the patient, for example, what support they will get following treatment or after leaving hospital.

Make sure you are clear about what support packages are available, and take up offers of help provided by professionals.


Support for professionals

Remember, they are human too! A smile and saying thank you can go a long way.

You may find that professionals get emotionally involved, especially if they are working with you and the patient for a long period of time.

You may be able to offer practical support during treatment and procedures, for example, by holding the patient in a certain position or comforting them by simply holding their hand.


Predicting the outcome (prognosis)

Cancer is a very personal journey. It can be difficult to accept, but a prognosis is only an informed estimate; everyone is different. Be aware that professionals often don’t and can’t know everything – things can turn out differently from expected.


Being assertive

As a carer, being assertive is really important. You will need to be prepared to challenge people – you may find this easier than you think! Don’t let others rush you.

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 complicated medical terms and jargon.

If you are unhappy with the treatment the patient is receiving, say loud and clear that this is how you feel.

Take your notebook of information about the patient’s care with you to hospital visits. It will help you remember key points about their health so you can answer questions easily.

Try to be brave enough to tell people when it is not a good time to visit – the wrong person at the wrong time can make the patient feel much worse.


Other ideas

Macmillan runs a workshop on assertiveness that could help you feel more confident when you are trying to get answers and things done. Call 020 7091 2010 or email workshops@macmillan.org.uk to find out more.


Please share your experiences
If you have any comments or advice about this information it would be great to hear from you - please comment on this blog post.
I hope that you find this advice useful. Tomorrow I'll post advice about relationships when you're caring for someone with cancer.
Take care,
Libby
Anonymous
  • FormerMember
    FormerMember

    Very useful advice.Thanks

  • FormerMember
    FormerMember

    Useful advice Libby thank you.  I think what I found incredible when I was caring for my husband is that not one of the Health Professionals asked How I was?  Not one.  Falling Apart wouldve been the answer.

  • FormerMember
    FormerMember

    Hi Jules43,

    I'm sorry to hear that you didn't get this support from the health professionals. It sounds like you were a rock for your husband though. Adjusting to life after cancer is difficult and the emotional impact can be long-lasting. Remember, our cancer support specialists are here for you too, whatever the situation is today - 0808 808 00 00 (Mon-Fri, 9am-8pm).

    Abi