Husband has Stage 4 lung cancer spread to lympo nodes and bit in liver

Hi Lisa65

It’s Megan here from Macmillan’s Online Community team. I hope you don’t mind me replying to your post, I came across your concerns and wanted to share some information with you.

I firstly want to say how sorry I am to hear about your husband’s cancer and what you are going through as a family. When being there to support a loved one it’s important that you have access to support for yourself, so I am glad you have found the Online Community. I hope you’ll continue to post on the site when you need peer support.

Please remember that our Macmillan Support Line teams are there to provide emotional, practical, and financial help on 0808 808 00 00 every day from 8am to 8pm. Do get in touch even if you need a listening ear and to talk about how you are coping.

I’m also sorry to hear that you did not get the support you needed from your husband’s Macmillan Nurse when they said they would help you. I am glad you phoned your GP and got the medication you needed.

To help address your concerns, I wanted to share some information about the support Macmillan can offer and how Macmillan provides nurses for cancer care. As mentioned above we have a national Support Line where cancer support professionals can offer emotional practical and financial help every day from 8am to 8pm. We also work in partnership with BUPA and the NHS to provide counseling and clinical support to people living with cancer. There’s lots more we can do to help you and your husband so I’ll share a link to this web page which has more detail.

There are different Macmillan Nurse roles. Some are there to provide palliative care and some are cancer specialists based at the hospital. There’s some more information on our website about our Macmillan trained and funded Nurses.

There may be other specialist palliative care nurses who are based in the community and visit you in your home. They work as part of a community palliative care team and may be connected to a hospice. They may have a different name, which might include the hospice they are attached to.

As a charity, we help fund the initial training, but as medical professionals, they are employed by the local NHS Trust where they are sited. Like most Macmillan Professionals and services, the day-to-day management is dealt with by the NHS Trust and any concerns about the services or individuals need to be fully investigated and dealt with by their complaints/feedback procedure such as PALS.

You can click on the link to find the relevant Patient Advice and Liaison service or you can contact the hospital to ask for details on how best to raise a concern with the team directly. If you are in Scotland you will need to click this link to visit the Patient Advice and Support Service. 

Whilst the information above will help you to raise a complaint directly with the Nurses management, we’ve also made our Services Feedback team aware of the situation so they can support the local trusts with any ongoing investigations in the near future. If you would like to share further details of your experience such as the name and hospital the Nurse works for, we can share this information with our Feedback team. As you are sharing personal information, please could you email feedback@macmillan.org.uk.

I appreciate there is a lot of information included in my email so if there’s anything I can explain further or help with, please don’t hesitate to email community@macmillan.org.uk or send a private message to the Moderator account.

Best wishes, 

Megan
Macmillan's Online Community team
Community@macmillan.org.uk