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Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Hospital Diagnostics Review

Postby Dandygal76 » Mon Apr 03, 2017 7:01 am

Funnily enough M I have just been through my work e-mails and all the ones involving dad and the Macmillan nurse at the start.... it was all delays delays delays and chase chase chase. I have a clear timeline of the desperation he felt around this time and how powerless we all were. To my massive regret now I deleted my message thread with him on the phone the day before he died. It would have been 18 months worth at least and probably some lovely ones before he was diagnosed. Some warped logic at the time told me I would never want to look back over the previous year and all the messages around initial chemo and last weeks and how bad he felt. It was a stupid and emotional decision. But perhaps it takes the emotion out of some of it if I try and do the same as you with our hospital. x

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Mon Apr 03, 2017 4:09 pm

Hi Dandy,

Regrets are pointless and destructive. I don't think your Dad was one to pour over old memories, he was too busy making new ones!

M xx

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Thu Jun 22, 2017 5:56 pm

Dear all,

Thank you to any who are still following this particular thread, it's not what you might call riveting! Just a little update on how things are going.

Next week I have a brief window of opportunity to address the MDT AGM and have specifically been asked to talk about our experiences during the diagnostic process. Those who have read "Our journey without chemo" may have an inkling that there were a number of system and protocol failures and some protocols which work very well for the clinicians but not at all well for the patients.

The Director of cancer services is keen that I deliver a "powerful" message to this audience. I am known for being direct which helps with "powerful" messages but I am also keen that once they have understood what it is like to walk in our shoes that I offer them an opportunity to do better. I believe there is particular intransigence in accepting that the patient wants to know who is in overall charge of their care while being diagnosed or treated and therefore who should be responsible for the patients welfare not just their physical needs.

I will also talk about exhaustion, anxiety before tests and waiting for results and the number of times the patient is required to starve and turn up at hospital. I will talk about grouping appointments together and running tests in parallel and pre-booking test review appointments.

Time is very limited but I am on first in the morning so hopefully they will all be awake. I just have to think about the one thing I want them to remember and make sure it hits home.

I would welcome any constructive comments that might help to focus their attention on matter that concern the patients and carers.

In July I am addressing the cancer board for a longer period and want to focus on the changes that need to occur to better the new 28 day diagnostic pathway and give the patients and their carers a much improved and more honest and supportive experience.

Much love to you all,

Marmalade

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Hospital Diagnostics Review

Postby Wife&Mum » Fri Jun 23, 2017 4:24 pm

Dear Marmalade

Your thread might not be the most riveting, but drama here is not necessarily a good thing, whereas an initiative that sets out to improve things for patients and their carers is very much to be celebrated and applauded.

Thank you so much Marmalade for fighting this particular battle, it's very much appreciated.

I hope you are doing ok, I think of you often.

Much love
W&M xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Hospital Diagnostics Review

Postby Justamo » Sat Jun 24, 2017 6:34 am

Marmalade, it takes a special kind of discipline to follow something up as thoroughly and effectively as you have. As well as carrying around a burden of grief on your shoulders you have been able to prepare and present a coherent and effective argument which is entirely constructive and with the aim of improving protocols for current and future PC patients.

Straightforward criticism would have generated a couple of meetings, then cursorily dealt with, and then tidily filed away. Your action has triggered a thorough investigation into the whole system and administration of these matters with pointers for improving the 'experience' in the future.

No, it's not riveting. But it may very well be life-changing for some families. Most of the events during this awful process remain etched on our minds for ever. Anger will always be part of grief. Anger at the disease itself is normal and understandable. Anger at incompetence and inefficiency should not form part of these last memories.

You will sail through your presentations. I won't say "Good luck" because I've always been aware that the harder you work then the luckier you get. You have prepared your work with care and compassion and I am certain that it will make a huge impact. In fact I hope it leaves a sizeable crater.

Much love
Mo

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Hospital Diagnostics Review

Postby PCUK Nurse Jeni » Tue Jun 27, 2017 12:10 pm

Dear Marmalade,

This is fantastic news!

Such a great way to drive change - you really have done so well in taking this to a constructive way forward, and taking a voice for change to the health professionals. A message that is vital.

I hope it all goes well Marmalade, and as others have said, you have put things across so eloquently and constructively, it is bound to have an impact.

A huge well done and thank you from us all here. You will make a difference.

Best wishes,
Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707