Is Cancer Care a postcode lottery ?

Hi Pooka,

Totally agree with your post. The McMillan Nurse service is very patchy. My friend who went through her cancer journey at the same time as my Gary had an excellent service and I wondered why we weren’t getting the same. My aunt had a fabulous service too. Ours was poor. She wouldn’t come to the house to see Gary and assess his needs. Used Covid as an excuse (but other McMillan nurses were doing Covid-friendly visits). Everything had to be done over the phone. She didn’t help us in any way. We had Marie Curie nurses too for a spell and they were magnificent. We saw the best and the worst from the health services during Gary’s illness. 

I hope you’re doing ok. I’m nearly 6 months down the road now and although it’s getting easier to deal with, I still have the occasional meltdown. Grief is not linear is it. 

Take care,

Peigi xx 

Thanks for your reply Peigi,

I'd like to say my husband's Macmillan nurse was just poor.. but they were non existent! He was never contacted by a nurse, nor were we assigned anyone or given any contact details to speak to someone from Macmillan nursing or any other group. 

We sarcastically joked when the advert came on television that stated...

"Your not alone with cancer."     we would add  "You are!"

It all adds to the grief I feel now.. Mark was let down and failed by the system in so many ways.

Keep strong and take care x

I agree totally. The care in our area was very limited which just made a terrible situation more challenging when our own well-being was vulnerable. At the time I just got on with it but it absolutely exhausted me. My local hospice was pretty good with outreach and the District Nurse team were also invaluable (although some had very limited knowledge in terms of dressing fungating tumours effective ely. In addition, I was asked to pick up a lot of the procedures myself due to Covid. With no medical or nursing experience I found that a steep learning curve. One dietician nurse asked me to do something about securing the GNT because she said she didn’t have the expertise- and I do??!!!! I told her I was a teacher, not a nurse. All of this created pressure when I needed pressure to be lightened. I did everything I was asked and research and learned every aspect of care because I was determined my partner would have the best care I could muster.

Sorry to hear your of your  experiences Rolo1...

I dont think doctors appreciate what some partners have to go through when living with a cancer patient.

I cannot begin to describe the horrors of how much blood I was dealing with on a daily basis.  No one wanted to listen or look at the photos I had taken in desperation of the situation. The Covid pandemic meant no face to face which basically meant "Go away.. you deal with it..all treatment is cancelled because the world has Covid" 

Nationally, certain hospitals and Support Care failed big time .. 

I completely understand your frustration. Stephen had major bleeds and I had to call ambulances. On one occasion a locus A&E consultant told them not to bring him in as per the catastrophic bleed plan where he’d bleed to death in under 3 mins!! He argued for 30 mins and it was clearly a major not catastrophic bleed as Stephen was alive !!! When I went to see the locus he lied and tried to blame the ambulance medic who had insisted that Stephen should come in. Did they expect me to just let him bleed to death over a few months. I was furious and the hospice intervened and I followed the ambulance and went to speak to the consultant which resulted in him writing a sensible care plan then and there which was agreed. I didn’t access many services so was very cost effective for the NHS!!! What frightened me was how people cope on their own if they don’t have family. The anger about this lingers so I empathise fully with how you feel xx

We never had support either! Nothing from Macmillan at all, one district nurse visit. I ended up going to the hospice and sobbing for help! They did what they could.

If Ric hadn't have died suddenly, I don't know how I would have coped! 

It is not good to hear! We didn't know about covid either so no excuse there! 

Love and hugs Alison xxx

My experience was pre-Covid. A Macmillan nurse visited but didn't really help. She even criticised me for being in pyjamas and not cooking meals! Never got in touch when my husband died so I called and left a message, no response.

Hi everyone, 

It's Megan here from Macmillan's Online Community team, I came across this discussion thread and I firstly wanted to say how sorry I am to hear that you haven't had the support you needed from Macmillan professionals and services.

Feedback is incredibly important to us as an organisation and we value people sharing their personal experiences with us. We have shared your comments with our Services Feedback team so they are aware of your experiences but should you wish to discuss this in further detail with them, you are welcome to do so.

There are ways you can contact the Services Feedback team to share additional information by filling in the Feedback form on our website or by emailing feedback@macmillan.org.uk.

If you have any of the following information to hand it will help the team with their investigations:

• Dates and times if relevant to any conversations.
• If the complaint relates to a member of Macmillan staff, their name, place of work and role.
• Details of where you saw Macmillan nurse/accessed Macmillan services

There is more information on our website about our complaints process. 

I hope as members of the forum you are finding it to be a comforting place to access peer to peer support. Should you need some help navigating or using the site, please don’t hesitate to get in touch with the Online community team as we are here to help. Alongside emailing us at Community@macmillan.org.uk, you can also start a live chat during the hours of 8am-8pm Monday to Friday.

Best wishes,

Megan
Macmillan’s Online Community Team

Hi Megan

i don’t need to complain other than there was no Macmillan presence whatsoever during my experience. I understand how busy everyone was and the lack of capacity. The reality was there was no-one there and that’s how it was.Even the stand in the hospital was never manned. It was Covid time and that just made everything more challenging as demands outstripped capacity. I hope that others are more fortunate in the future and understand that Macmillan is dependent on charitable contributions which would also be affected. I appreciate having a space to share feelings and the opportunity to speak with others who understand the challenges faced.

The website contains useful  information, but in the darkest times you were on your own. It was just how it was. I did use the phone service for advice and they did their best to support with suggestions. Other support was not evident.

kind regards

Hi Megan,

The original post was written by me ...

I have no issue with any individual Macmillan nurse... my husband was not assigned a nurse.

I wish I had been given some help even someone to ask for advice when I was dealing with his care. My days were spent constantly dealing with copious amounts of blood and horrific symptoms of his cancer with no help from anyone. Family were unable to visit due to pandemic. Hospital treatment was cancelled for the same reason.

So yes, a Macmillan nurse or any support for advice would have been a help to me.. But, sadly it wasnt to be.