"Lack of support for neuroendocrine cancer care"

In September 2021 I was diagnosed at the Ulster hospital ED with Pancreatic cancer that had spread to my liver. It was devastating for myself and my family.  After 5 weeks of tests it found to be a very rare neuroendocrine cancer and my care transferred to the Royal Victoria Hospital Belfast. I expected that I would be assigned a named nurse and be seen quickly and given all the information I needed and start treatment.

None of that happened.  The only support I got was from Mcmillan and my GP. I should have been started on Pancreatic enzyme replacement therapy but I didn't get this for 5 weeks and it was a Mcmillan nurse at the Ulster Hospital that put me on it.   It took us weeks to get information from the neuroendocrine nurse at the Royal.  Only after threatening to make a formal complaint was I seen in  November and started treatment.

I have been unwell a few times since November 2021 and have tried phoning the neuroendocrine helpline but we get a recorded message that tells you to leave your name, date of birth and they will try to get back to you within 2 working days.

A month ago I was ill and  phoned my GP who told me since my cancer was rare she knew little about it so it was best to phone the helpline at the Royal. Reluctantly I did so, and after waiting hours the neuroendocrine nurse phoned told me they would email the doctor and get back to me. Hours later they phoned back to tell me the doctor said to phone my GP or go to the ED. I said that wasn't acceptable and the nurse said they would contact the doctor again. Again hours later they phoned back to say the doctor had advised to go to my GP or the ED. I said that they are the experts and I am being asked to go sit in an ED for hours when I'm unwell to be seen by a doctor who will know nothing about this cancer.  They said they would talk to a different doctor and call me back, but they never did.

In desperation I called my Palliative Nurse who has been amazing, a life saver. He talked to a doctor at the Down hospital and got me an appointment for the next morning at the Rapid Assessment Centre. They were amazing and treated my fiance and myself with respect and care. I got emotional as we felt that we were finally being listened to.  I was told that my liver tumours were causing mischief which was why I was unwell.  The next evening my neuroendocrine consultant phoned and agreed I needed some intervention. We saw them at the end of May 2022. We are now waiting for word on what treatment I will have to help with my symptoms.

My family and I feel that the neuroendocrine service left us to find our way on our own.  Patients are told if they have problems or concerns phone the helpline, but we did not find this fit for purpose. The helplines at the City and Ulster hospital cancer centres are well run and you get a call back within 45 minutes. Any concerns are dealt with quickly and efficiently. My son has had first hand experience of the Ulster hospital cancer care. I expected the same from the Royal Victoria Hospital with my own cancer but unfortunately that was not the case. I thought that my cancer team would be there for us but we have spent precious time and energy fighting to be heard by our health care team instead of spending that time and energy on fighting my cancer. The biggest problem with the neuroendocrine team is lack of communication and slowness to act.

This has caused us to have lack of trust in them.  I spoke to a nurse with  Neuroendocrine UK who has 27 years experience and learned more about what's happening to me in that 45 minute call than in 6 months from the Neuroendocrine departure at the Royal Victoria Hospital. I am aware of other patients who have had similar problems over the years with this same department.  I hope they could learn from their mistakes and other patients don't get left to find their own way with this horrible disease.