Who is coordinating my care?

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Cancer is fraught with uncertainty. The healthcare received should never exacerbate it. My clinical team left me coordinating my care when I really didn’t know what was happening. At the same time, holding the hospitals accountable for my care while I was receiving it. If I didn’t, I don’t know that I would be here today to tell my story:

No one was actually coordinating my care

I was diagnosed with a rare and aggressive type of primary breast cancer with my care shared between two hospitals and two NHS trusts. One for diagnostics and surgery and the other for chemotherapy and radiotherapy. Consequently, four organisations and four different care teams provided my care. The trouble was, no one was actually coordinating my care. I was passed from pillar to post. I had no idea what would happen next, and when I asked, they all pointed the finger at each other. The notion that “it’s the other hospital’s responsibility” was one reason I had to involve the Patient and Advice Liaison Service (PALS) twice to get the NICE standard treatment for my cancer.

Hit with a wall of silence

Upfront, I had to sign a consent form to receive six cycles of chemotherapy. Each cycle of chemotherapy was due every three weeks. I received the first course of treatment, and the team advised me they would be in contact to coordinate the second course of treatment. Great, I thought, but nothing happened.

I waited nearly three weeks and still, not a dicky bird. Knowing I had to receive treatment, I called the oncology unit numerous times. I even tried several different numbers across multiple days. No one returned my calls, and I was hit with a wall of silence. No one was coordinating my care.

I was getting annoyed and finally went to the hospital to demand my next treatment date and time. What if I had been immobile? What if I was too sick to travel? If you miss more than one appointment at our hospital, you are discharged back to your GP with no further treatment. I couldn’t let that happen; the stakes were too high. Had I missed the guidebook, which would tell me that I was responsible for coordinating my care?

And the silence continues

When first diagnosed with cancer, one of the tests I had, showed that I had tested positive for HER2. HER2 is a protein that promotes the growth of cancer cells. Because the results were unclear, I had to have a second test to confirm whether I was HER2 positive or not. Whilst I knew this was important, I didn’t appreciate how important at the time. I needed a second test to confirm this part of the diagnosis. The doctor told me someone would be in touch with the results. Phew, someone was taking control, or were they?

Yet again, silence prevailed. No one contacted me. Eventually, I had to reach out to my breast care nurse to find out my results. She emailed me to tell me I was HER2 positive. I knew this meant that I could receive Herceptin, a type of treatment for my breast cancer. I didn’t know much more than this. Why would I? I hadn’t had breast cancer before.

Due to poor communication, I had to research Herceptin online. I had thought Herceptin was an optional treatment. However, I realised that having this treatment would improve my prognosis significantly. It could save my life.

Information buried in my notes: Who is coordinating my care?

I have two cycles of chemotherapy but no Herceptin. I am concerned about this and ask several times when this treatment is due to start. My clinical team told me that there was nothing in my file to indicate that I needed Herceptin. The only evidence I had was the email from my breast cancer nurse to tell me the results. Why they could not speak to her about this, I do not know. Again a lack of continuity and poor coordination of my care.

Knowing its significance, I continued nagging my healthcare team. After quite some time, one of my oncologists found the HER2 positive biopsy result buried in my file and started to make arrangements for me to have Herceptin. If this result could lead to life or death decisions, why was it buried almost beyond discovery?

Sadly, issues of miscommunication didn’t end there.

Mistaken Identity (1)

My mastectomy was the first surgery and anaesthetic I’d ever had. I was so anxious and had nightmares about waking up after the operation and seeing they had operated on the wrong body part. This nightmare almost came to fruition when I was being taken into the theatre to have my mastectomy. An observant hospital porter noticed they had mistaken me for another patient with the same first name.

The clinical team hadn’t done the usual baseline checks, such as asking for your full name, date of birth, home address, and what surgery you expect. They only asked for my first name. Imagine my horror when I realised that they had bought me into the theatre area to do a gastric band operation on me instead of a mastectomy. They rushed me back to the waiting room whilst they found the correct patient.

Why wasn’t the standard patient identification process followed?

Mistaken Identity (2)

The saga didn’t end there. When the team called me into the theatre again for the correct operation, this time, the anaesthetist looked at me in surprise. He said I looked much slimmer than he had expected. I wasn’t sure how to take that. It became apparent that someone had written my weight down incorrectly on my anaesthetic form. Two digits were the wrong way round. So what you might think, but actually, this was serious. The anaesthetist had prepared an anaesthetic dose for someone nearly 30kg heavier than me. I am not sure if I would have survived this dose. By now, I was a nervous wreck! I didn’t know whether to be relieved that this error had been picked up or angry that a second mistake had been made in such a short space of time.

And the errors continued……..

The gaps due to miscommunication, including, but not limited to:

  • chemotherapy cancellations due to lost drugs, 
  • lost prosthetic breast after mastectomy, 
  • no physiotherapy referral
  • radiotherapy scheduled for 9 pm when the department closed at 8 pm, 
  • and the admission letter for reconstruction surgery sent after the surgery date.

And the list goes on. Due to a lack of organisation and communication, these repeated failures caused my loss of faith in the hospital.  

I lost complete confidence in my hospital and my care (or lack of it) that the anxiety and stress lead to me having post-traumatic stress disorder (PTSD). 

Message for Healthcare Professionals

Being diagnosed with cancer turns our worlds into a spin. As I said in my opening comments, cancer is fraught with uncertainty. We do not know what is right or wrong or what happens next. We want people we can trust to guide us every step of the way. In no particular order:

  1. Manage our expectations.
  2. When you give us information about our treatments and care plans, find out what we want to know and help us understand.
  3. Help us make informed decisions before signing consent forms.
  4. Make it clear from the start whether you will organise our care or whether you expect us to do this. Please take away that uncertainty. 
  5. Act appropriately and take away unnecessary risk – follow due care and procedure.

Be mindful that although this might be a normal day for you, it most certainly isn’t a normal day for the terrified patient sat in front of you who has just been diagnosed with cancer and whose life depends on you getting the right treatment.

Message for Other Patients

From my experience, I would suggest:

  1. If something doesn’t seem quite right, be respectful but question it.
  2. Don’t let people fob you off with unhelpful comments like ‘it’s nothing to do with us, it’s the other hospital or department.’ They should surely try to help us find the answers we need.
  3. In the event of a serious illness, don’t be afraid to turn up in person if they won’t call you back or take your call.
  4. Definitely use PALS if you need help or want to make a complaint. You are not telling tales on someone, and it won’t compromise your care. If you don’t report problems, then the services won’t change, and other lives may be at risk.

We want to hear from you

If you have a story about your poor or good communication experience, then we want to hear from you. Please use the linkSubmit a story below to share your experience with us  You may also be a family member or carer with an experience to share.

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