"neuroendocrine tumour (NET)"

About: The Christie NHS Foundation Trust

Unfortunately I am deeply dissatisfied by the level of service provided so far. The request to christies was made over 3 weeks ago by our hospital, the only appointment we've had is for further blood tests after over 2 weeks of a stressful wait. At that consultation We where met by a nurse, who took the history etc and was very polite and helpful. However I was very dissapointed with the lack of willingness of the DR to answer our questions, who instead felt it necessary to ask me why so many questions where important! further I felt the doctor mocked me by asking me what I suggest they do, as I felt they where not giving us all the options available. To which the doctor swiftly rejected all my suggestion without an explanation.

Reassurance was not given regarding my mums condition until I stressed that they need to provide reassurance that she will be ok waiting as they where not starting any treatment or had a full diagnosis after such a long time, and as they where doing further investigations.

My mother had an urgent cancer screening sent via the GP over 2 months ago, as yet we have been told by our hospital that she has definitely got NET cancer with multiple malignancy but no treatment started or detailed treatment options given yet.

Instead we have so far been told by christies that there is no cure, no surgery, nothing they can do for the NET but somostatins which can possibly control it, and that the liver malignancy is also something they can't do anything about and PRRT is not available on NHS anymore! However at the same time The Dr told us it is not aggressive and my mum is ok to wait another 4-6 weeks maybe more for treatment options! Extremely frustrated by the laid back approach, and conflicting information.

I find this very inaccurate clinical advice as I am aware there are many options, whether they are willing to offer them based on statistics and funding is another thing.

We are now left to wait another 4-6 weeks for another scan, a review of the blood tests, and a 4th MDT meeting out come. This means my mother and family are left to stress and wait another 4- 6 weeks maybe more depending on when they book us in for a consultation.

Hence I feel very dissapointed by the initial consultation, the length of wait for treatment and the withholding of information by the Dr, and lack of willingness/ability to adddress our concerns.

I feel very upset and felt as if I had to try and battle answers out of the DR who didn't give us any more clarity or information on the condition than we already had via our hospital.

Very Disappointed and disheartened, would have thought Europes leading centre would have

Dr's who are sensitive to the patient and families queries and provided a service and treatment which matched or exceeded the NHS guidelines on time to wait for treatment. Unfortunately We are upset and deeply dissatisfied by the level of service provided so far.

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Response from The Christie NHS Foundation Trust

We are sorry to read about this experience.

We think that you have already contacted our PALS team and we are working with you to resolve this. If this is not the case, we would be grateful if you could contact our PALS team on 0161 446 8217 or pals@christie.nhs.uk so that we can advise and assist.

The PALS team

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