Hi all,
Just wondering if it it is just me, but I've been assigned a Macmillan lung cancer nurse, but I don't get on with her at all. She's not helped me whatsoever.
I feel like I do all the running around over appointments. It's me who told her when and where my appointments where. I told her when I went in for my lung biopsy that it was important that I had some emotional support (she'd told me she'd call ahead), no one came, she'd clearly not telephoned.
I'm now into week 3 of awaiting results I was promised within 7-10 days by my surgeon. I phoned her today to be told (like a nuisance) that the lung specialist co-ordinator was phoning twice a day to get my results. I don't actually like her or feel she is a support whatsoever.
Can you ask for a change if you need to? I want to burn this woman's business card! She's horrible. Has anyone had an experience like this?
I had a laugh today, there was an advert on our local bus top, Apparently 'Macmillan see the person, not a patient.' .
Don't get me wrong, I have used the Macmillan support line when I'm struggling, and it's been a great help. But she can do one!
Hi Newbie sorry to hear that you are not getting the support you want or expected to be be getting from your Specialist Cancer Nurse (someone often wearing the Macmillan Badge).
Like any other profession we do come across the good and unfortunately the not so good.
This information is taken from this LINK.
They carry the Macmillan name as an acknowledgement of their affiliation to us through our initial funding and ongoing support and it is seen as a badge of quality.
All Macmillan professionals are expected to provide the highest possible quality of care and to adhere to the standards set by their own professional body, such as the Nursing and Midwifery Council or General Medical Council. We have agreed quality standards in place with partner organisations and undertake regular reviews of Macmillan services.
If you are unhappy with a Macmillan professional, you will need to complain directly to our partner organisation as their employer, for example the NHS Trust, so that it can be investigated under the correct complaints procedure. We can advise you on how to do this.
What to do?......like any other professional service you register your concerns be it directly to the professional. I have done this over the years but not about my Specialist Cancer Nurse (Macmillan Nurse) as she is amazing but generally where a clinical professional (including consultants) are not providing a professional service. Most accepted the feedback.... actually appreciated the feedback and the service improved but as you would expect, not everyone received the feedback well.
You can complain directly through the hospital trust by using the hospital PALS department.
As for asking for a change of a Specialist Cancer Nurse you need to talk with your Consultant directly, but many clinical departments will only have one Cancer Nurse Specialist (often badged as a Macmillan Nurse), some busy/big departments may have a few…… some departments don’t have any!!!!….. I had no Specialist Cancer Nurse for my first 14 years of my 23 years cancer journey.
I do hope you can get this sorted out soon as issues like these just make a challenging journey more challenging.
Hi Mike,
Thanks for your reply. I have reached out to PALS at the hospital today.
I know these test results take time, but I could do with knowing if I will find out this side of Christmas or not to get my head in gear for what to expect. They have said they'll try to chase the results, or at least give me a timescale that I can try to work to. It's just so hard feeling this in limbo.
I've also managed to get some counselling in place today through Macmillan, so that's a positive.
As for changing nurses, I feel more supported by her colleague, who is on the same team. I'm hoping I can ask my consultant for a change of face. It's just so disappointing when she told me it was her job to make sure things happened in a timely fashion, and that she was there for emotional support. I don't feel this is a Ronseal moment! It doesn't do what it says on the tin!
Never mind, just got to keep plodding on. Hope you are well, Mike. 
I am doing well, over the years I have had to deal with at least 8 different clinical teams and the difference across the teams is remarkably different.
At the beginning it took over a year to get a clear diagnosis for my incurable blood cancer so ai do understand the challenge.
I do hope you get answers soon.
Cheers Mike, it's certainly an eye opener being in this position.
Good news - PALS have escalated it to the Head of Thoracic care at the hospital. She should have more power than my respiratory pathway co-ordinator, so fingers crossed for a bit of action. At least feel like I am doing something to move things along.
You are completely powerless in this situation aren't you? At the whims of the medics! I think that's what is doing my head in. 
You learn to be your own advocate and take control of being able to get answers and make progress….. well done.
Your are getting the hang of this Helen 
Yes, I think I am sadly! I'm just expecting to be fobbed off on a daily basis.
I've decided that I shouldn't expect my results before Christmas, and just try to forget about it all. Kick it into the long grass, mentally if I can. I want to try to concentrate on having some sort of Christmas instead. I've just got to avoid burying my electrician and get rid of the builders first. 
At least that gives me something else to focus on!
It’s always best to know regardless of the time if the year. Over my many years I have had lots of good news just before Christmas but also disappointing news but we never let the bad news define our life and how we enjoyed life….. it’s up to us all to make the best of what we are dealt with ((hugs))
