A checklist at diagnosis: What would you like to see included?

[NicoleLeukaemiaCare]

Hi all,

We're currently working on a document that a patient could use at diagnosis.

Our question today is what would you like to see on a checklist for people who are newly diagnosed?

Would it be work related, finances, will writing, questions to ask the doctor?

We'd love to hear your ideas so we can incorporate them into the final piece.

[JigFettler]

Very happy to help.Jig

[Ghounds]

Me too. A really good idea and I'm sure it will be very useful.

[2003UK]

Hi Nicole, For a checklist for people who are newly diagnosed I think people are usually in shock, head all over the place and it is keeping it simple. I think it is too early to have finances and will writing, they could be issues in different smaller checklists/leaflets.I would suggest that people start a file.

I would include an abridged dated diary of events

A dated list of infections + a copy

A dated list of symptoms for their medical team + a copy

A dated list of relevant medical history + a copy

A dated list of medications +a copy

A dated list of allergies + a copy

A dated list of vaccinations + a copy

Questions to be asked including what do we do now or not and practicalities, ask questions about your fears and practicalities ( mention that medical people often speak a mew medical language so ensure you understand the answers, if not keep asking for clarification and ask that follow up question, take time before responding)

A dated list of difficult thoughts and emotions

A diary dated sheet for medical appointments replies and way forward

Space for copies of medical results

Space for relevant leaflets

A list of medical contacts, practical and emotional support and their contact details

Mention that medical persons often only deal with the medical issue in front of them and we are the experts on ourselves so it is our responsibility to tell them other relevant details.

The more organised you are the more empowered you feel when you feel so out of control,

I am in danger of making this to complicated, thanks for asking.

Thank Leukaemia Care this checklist will be so helpful

[emmieb-UK in reply to 2003UK]

This is perfect!! I was in total shock at diagnosis and took not a single thing in - consultant said in letter she is calm and understands....no....i had zoned out and wasn't listening....just nodding so I think your list is fab - thank you.

[Smakwater]

NicoleLeukemiaCare,

Lists of credible CLL study sources, support organizations and information sharing networks such as -

1. Patient advocacy resources. E.g, Patient Power, CllSociety.org, HealthUnlocked etc..

2. CLL research organizations. E.G, ASH, ASCO, LLS etc..

JM

[2003UK]

Another thought whilst in the bath - head every piece of paper you have with your name, address, date of birth and NHS number so that if you have to hand it over or it does get mislaid at a medical appointment it can be attached to their file.