Hi everyone,
I read on the Macmillan website that all patients diagnosed with Cancer will be allocated a Clinical nurse specialist (CNS) and they would be your 1st point of contact in the event of any issues with treatment or side effects, however my husband Jeff has not been allocated one following his diagnosis of CML in February. We did ask the haematology nurses on the day ward where Jeff attends for his blood tests, but she shrugged it off as not necessary and said we can always just call her as she is the lead haematology nurse on the ward. The ward is only open 9am-4pm Mon-Thurs so if he experiences any issues outside these hours she said he should go to A&E. Is this the level of contact we can expect? Or is the nurse mistaken and Jeff should also have CNS that he can contact for advice?
Many thanks in advance for any clarification on this for us, Kathy
Hi chattykathy and welcome to this corner of the Community and sorry to hear about your husbands diagnosis,
It’s an interesting question you are asking about the availability of a CNS.
I was diagnosed back in 1999 with a rare type of Skin Non Hodgkin’s Lymphoma and I never had a CNS until I was 15 years on when I went for Stem Cell Transplant.
My Dermatology and Heamatology units did not have a CNS and I have talked with many people over the UK who are in the same position.
It is ultimately up to the hospital trusts to decide if they can fund CNS posts or not. Some CNS posts are initially funded by Macmillan with the hospital trust taking over the post but obviously there is not enough finance to fund all the posts the UK needs.
For me the contact was my Consultants and access was often through their secretary or during treatment the charge nurse on the ward and out of hours through the NHS 111
