Macmillan and NHS info gathering interview

[joatkinson]

Yesterday i had a 45 minute phone chat with the people who produce the Mori polls, they are gathering information in order to produce a questionnaire for Macmillan and NHS on quality of life for cancer patients and survivors. about time too.

[Katmal-UK]

What sort of questions did they ask? I have to say that apart from attending hospital appointments I could be dead for all anyone knew and just another statistic!

[joatkinson]

They wanted to know when I thought the questionnaires should be done, I said during treatment and at the 3, 5, 10 year points. They asked me what kind of questions should be asked, I said, pain, finances, family life and mental health among others. they asked who could benefit from the results of the questionnaires, I said the health professionals, especially GP's and also other patients so they can judge the journey they are on. There where other things but my memory isn't great!!

[Katmal-UK in reply to joatkinson]

Sounds interesting. i had an appointment with 'my' Macmillan nurse 2 months into treatment, havent seen ir heard from anyonce since.... that was over 8.5 years ago. Any support I have got I have had to source myself by contacting my local hospice and they were a delight.

[Hidden]

We have Cancer Support Centres here in Ireland that we can go to for different types of therapy. I have got reflexology and counselling and Art Therapy. I havent attended for a while but I know if I pick up the phone, I can arrange to drop in. I am presently doing mindfulness which helps with stress levels and it is a calming influence. If course we have Ovacare which holds coffee mornings and gives us a chance to meet with others in the same boat, They also have patient information days twice a year. So perhaps this kind of idea may be suggested to Macmillan, I understand Ovacome do hold tea parties but tickets go very fast,

[Lily-Anne]

My Macmillan nurse has been a dream and I assumed everyone had my positive experience so am really surprised that it's not. She can be hard to contact sometimes but must be so busy. I do wonder if it's where you live.

I'm four years in and apparently when I get to five I'm a survivor what happens after that isn't recorded for stats I'm told. Maybe it should be.

LA

[meboo in reply to Lily-Anne]

I am so pleased you have had a positive experience, because I see lots of fundraising for them & we have wondered where it all goes. It's good to hear both sides of the story

[meboo]

My mum cancelled her decade long direct debit to McMillan after her experience (and similar experience of her friend ) as a patient. Just like Katmal, they came armed with promises just once when she was extremely ill and first diagnosed. It's such a shame as she doesn't have a CNS through the hospital so has had no support at all. In the 2.5 years & 4 lines of chemo since she has heard nothing. Marie Curie now benefit from the direct debit ! Maybe less time administering & surveying and more time nursing !!