Hi,

First off MacMillan nurses have absolutely nothing to do with Social Services, but they can put you in touch with them if you ask them to.

Their first visit will be to get to meet you, find out about what impact your condition is having on you and to gather your preferences about your care plan. The one thing they will NOT be doing is judging your competence with a hoover or a duster! 

Second - palliative care. There are two types of treatment, curative and palliative. The first aims at curing you, the second aims at treating your symptoms and making your quality of life as good as it can be. Many people confuse and conflate palliative care with end of life care and cause themselves unnecessary stress. Similarly, people also confuse and conflate an incurable condition with a terminal condition - not helped by the fact that there’s no formal medical definition of terminal. I’m told that no-one should use the phrase terminal unless death within 6 weeks is forecast - but sadly some people throw the word round like confetti. 

My first MacMillan visit was back when I was diagnosed at stage 4 in late 2013. One of the first things she asked me was whether I’d prefer to be treated at home or in a hospice  when I reached end of life and whether I’d like to visit the local hospice to familiarise myself with the place? My response was a little rude! I said “I’m starting chemo next week, if that doesn’t work we can discuss my preferences for end of life care at a more appropriate time and I’ve spent more than enough time in hospices visiting my Mum and Gran when they were dying”. She explained that they had a standard format for the first meeting and that she was unfamiliar with my prognosis (which was awful but thankfully wrong). We then went on to discuss other ways MacMillan could help - counselling for my wife and fast-tracking my application for PIP. 

Try not to stress about the visit, a lot of people struggle to get an appointment with them and they genuinely are there to help. We’ve used their services for other family members and we couldn’t fault the work they did.

Best wishes

Dave

Hi Carot , I’m sorry to hear that you have found this intrusive and upsetting. First of all you have control on who comes into your home , so if you don’t want any visits you can of course refuse, or you can have consultations over the phone if you wish. MacMillan nurses are there to give support to anyone with cancer, but it does not mean that you are “terminal”. They are not social workers but specially trained nurses who can offer emotional and practical support if you need it. They are not there to judge you on your “dusty” house. You have been through a lot already by the sound of it . My suggestion ( if you want to of course) is to keep in touch with the nurse via phone calls , with the understanding that you can ask for a home visit as and when you want one. I wish you all the best x

I have decided to cancel the appointment. I realised that I was not consulted about the referral, nor was I told about it. I did not know. I did not consent. I felt bullied into accepting the home visit. I still don't know who referred me. Having read over two days, and checked everything online to find out whether it was bogus or not, was it a scam? no letter? no message? no GP communication? no hospital team mentioning it? Did I even understand right, I have just woken up, then out of the blue, a cold call.

Today I rang the telephone number I was given to check. I did it at 8pm. It should have been manned 24/7: a recorded message asking me to leave a message. I didn't leave a message. I will try to cancel tomorrow, when their offices are fully manned. If I can't, I traced down their office, through my phone recording their telephone number. I found a match on Google.

Each page I googled showed the word "palliative" next to the word "end of life". The referral form to the agency - NHS funded, not council funded (I was wrong there, it was always part of the NHS and never Social Services), has the horrible tick boxes of expected length of life. My heart jumped. Days, weeks, months, years. I am not ready to know that. I googled to find out more about the "palliative team". I wanted to find out who could have referred me. That is when I saw that whoever had referred me, might have also estimated my survival time. The manner and the timing are wrong.

Cancelling is the only option. 

Having read your story I agree with you 100% that the only way forward for you after that is to cancel ,what an awful position to put you in ,maybe they should wait till they're asked next time far from being helpful they've caused a lot of extra stress they've obviously done this before and other people have maybe just accepted it even if they didn't want to ,many people are very private and don't want this kind of intrusion I know I wouldn't ,if you don't want them intruding on your privacy just politely tell them thanks but no thanks end of story .

Carot , you are obviously very upset that you feel bullied into a home visit which should not have happened. You have probably automatically been referred to the MacMillan team , which you obviously don’t want at the moment . Just to let you know , palliative care does not mean end of life . Palliative means managing symptoms if /when they arise , it does not mean end of life care. 
Just an example of this : my friend has non Hodgkin lymphoma , it is treatable but can’t be cured so she is classed as “palliative” but 15 years on she’s still the same . If she gets any symptoms that bother her , they treat accordingly ( she had a week of radiotherapy recently) but works full time in a very busy job . I hope you manage to sort this out. 

Hi Carot,

That’s understandable given the anxiety you were feeling about the visit.

As LCR has said, the visit for an evaluation would have been automatically referred as part of your standard care pathway - probably by your GP.

There’s nothing sinister at play, a cancer diagnosis leads to this assessment of your needs. People often complain when they haven’t received an appointment with MacMillan quickly enough after their diagnosis. 

MacMillans is a charity who are commissioned by your local NHS to provide specific services. It is doubtful this will include a 24/7 telephone enquiry service. When my Mum was under their care, we did have an emergency contact number but those were different circumstances and later in her cancer experience. 

Having cancer is a very scary experience and people have differing requirements. Like you, my Mum didn’t want to know any of the statistics about survival rates. I was the complete opposite. Ironically, that was one of the questions the MacMillan nurse asked me during my needs assessment. 

Google is a terrible place to look for information as it doesn’t differentiate between information sources you can trust from weird and whacky sources which are dangerous and utterly wrong. End of life care is a part of palliative care not the whole story. Many of us have been receiving palliative cancer care for a decade or more.

best wishes

Dave