What support from the hospital do people have?

I saw your post and joined in order to respond.

I was in exactly the same situation and it got worse from there. No communication and no support. I'm actually wondering if you're at the same hospital.

I'm currently undertaking an official complaint but here's what I've done so far. Get a referral to your local hospice palliative team. Mine has a 24 hour helpline, holistic treatment, therapy etc etc I self referred but if you can't, ask your GP.

Get a second opinion on your treatment plan. Your Dr can do a referral to a specialist centre. I did mine at the Marsden.

Get moved to a different and better hospital if you can. I tried the Marsden but no joy so I contacted the second best. They said they were closed to outside referrals but I got a consultant's details and asked my GP to contact them. They said it's a possibility so I'm chasing up with my Dr.

I have also been in contact with the Patient's Association for advice. Other organisations that have been helpful is Breast Cancer Now.

Future Dreams has lots of online activities and specialists eg nurse, nutritionist, counselling etc and offer some free if you are low on funds. Maggies provide in house support. 

My hospital have really screwed up my treatment (I have a chronic illness they didn't consider and treatment has made it worse) so do whatever you can to get somewhere supportive and professional.

Thank you Kbm, I also have a chronic illness which has been made worse by them not taking it into account. I was wondering if it was the same hospital but I'm in the scottish borders and you mention the Marsden so I guess not.

So much helpful advice,thank you so much. I'm going to think about what to do next,there aren't many hospitals around here, I know the oncologist comes from Edinburgh which would be the other option but I'm not very impressed by her & the lack of information either.

I'm sorry you are going through all that on top of everything else, I hate that we have to battle for the support we should be getting.

If you can't move hospitals due to distance,  then I wouldn't trust your hospital and would get second opinions at every stage. For example, you say they've made your chronic illness worse, ask another hospital what to do. As far as I'm aware,  you can get a second opinion anywhere so ask Christies. More info here:

https://www.patients-association.org.uk/getting-a-second-opinion

Find out who your head nurse is and explain that you're finding staff unsupportive, she may be able to help. Other alternatives are PALS. I emailed and text as much as possible so I have a paper trail which went into my official complaint. It might help to keep a timeline. 

I am completely exhausted and very stressed which is why I advised to just get out of there. Find the best hospital in Scotland and travel if you have to. Can you get in The Beatson for example? It may be possible to arrange some treatment closer to home eg blood tests. Another alternative if you need intensive treatment, would be to stay near the hospital and see if there are any funds/grants available if you don't have the money. 

There may be charities that contribute towards travel costs, you could try your local Macmillan centre for advice, contact the council or ask a cancer charity.