Delays with getting a care & treatment plan?

  • 2 replies
  • 20 subscribers
  • 668 views

A family member has been diagnosed with pancreatic cancer which is clearly devastating, we are no further forward in terms of a care and or treatment plan going forward and it has been weeks and weeks. Is this normal? How long did it take you or your loved one to receive a plan? It feels so cruel to receive such a diagnosis and to then try and navigate a very disjointed system. 

  • Where are you located?Treatment can sadly vary from region to region and dependent on the  stage of the  cancer and age and health of the patient .When my husband and I got the bad news at our local university  hospital, I asked what stage it was...’don’t know’ was the  answer, although we had just been told incorrectly it was in the pancreas, lymph nodes and liver.When is he being referred???The answer was that it would  take a while.I was not taking that and called the PA of the head of the clinic at the local cancer hospital the next day and got him into the system and an appointment the next day.Do not accept this...yes everyone in the NHS is busy and overworked , but you have to push!If your relative is terminal and there is not much that can be done, the care should be palliative, but you need answers and help.Good luck, prayers and blessings.MacMillan should also be able to advise.Also google the specialists at the hospitals in your area, find out their names,  call the switchboard and ask to speak to the NHS PA of the specialist/Head of Upper GI cancer! Hope  this helps?XX

  • Thank you for your reply and I am sorry you and your family are in this awful situation too. It seems no amount of pushing will help, there simply just is not the availability for tests and appointments any sooner. Feeling so very let down by the NHS.