Hospital Diagnostics Review

[WifeampMum]

Absolutely fantastic Marmalade - you are making a real difference to a system which is clearly in need of improvement. Taking on the NHS in this way needs guts, determination and knowledge, and you've got all 3 in spades.

Thank you so much!

W&M xx

[Veebee]

Marmalade... Very well done for your tenacity and expertise and to see some excellent results must make you feel all your hard work was worth it. After nursing Louis through his illness to the end nobody would have blamed you for wanting nothing more to do with PC. You deserve our admiration for your selflessness and determination for change. I think you're amazing.

Vee xxxx

[Guest]

Thanks one and all for the encouragement.

I am very interested to know what you all feel about the rapid test and first oncology appointment booking. It would mean quicker diagnosis and access to chemo (appointment would be cancelled if not required) or whipples but it would mean that the time between being told that there was a a good chance it was PC and tests/treatment starting would be shorter. My first reaction was great, fantastic but I then realised that many stories on here reflect the shock and distress people feel when the possibility of PC is raised given it's fairly dire prognosis and the time they need to reach acceptance, if they ever do...?

Much love to you all M x

[Veebee]

Hi Marmalade.....It would be marvellous for future patients if their oncology appointments could be arranged on the day of diagnosis. It would also be great if at the diagnosis the patient isn't given confusing, conflicting information. We were told on the day of the scan that chemo would be pointless, a few days later we met with the oncologist who was going to put the stent in and she told us we'd been given wrong information and he could have chemo. The appointment for the 1st (and only ) chemo was about 8 weeks after the day of diagnosis. Before Allan had this chemo, we met with another oncologist who said (at Allan's request) that the chemo would give him a few weeks more than if he didn't have it.

The appointment centralisation system would be an improvement on the system in Bradford. Because Allan was seeing a bladder cancer consultant and rheumatology consultant because of the wrong diagnosis of vasculitis, we had many appointments and some of them were at the same hospital but on different days. Allan was discharged by both these consultants about Jan/Feb. but the toing and froing before that really told on him. One department didn't know what was happening with another department because they hadn't seen his notes. So, each visit was spent explaining what was going on. How hard can it be, in an age of technology for each dept. to have access to notes online and to be able to add or amend as necessary. When patients have a terminal illness why can't their notes be colour coded? A coloured outline for certain illnesses, which all health professionals can easily recognise, could be put on their notes.

I've rattled on a bit there, Marmalade......keep up the good work.

Vee xxxx

[Dandygal76]

Hey M.

You know from most of us that the hardest thing was the horrible wait to diagnoses. In our case we already knew dad had it because we had access to letters and records that others would not normally have. So, we knew in December (and they did) that it was most likely PC. We got fed up with them come mid January and got an MRI ourselves (so we saved 2 weeks of diagnostic time for them and dad). PET scan end of January, final terminal diagnoses 5th February and we still did not have oncologist appointment going into March and so dad went on the trial (both oncologist and trial happened early March). It was a disgusting and terrifying wait of 2.5 months of them hiding behind the fact the NHS cancer times limit seem to all reset behind every diagnostic action they take. It felt like they just didn't care and he was just another number. Even worse when the Macmillan nurse at the specialist PC centre accused dad of queue jumping by getting a private MRI, rather than see it as freeing up resource so someone else didn't have to wait. Anything that can help reduce these times would be excellent. I for one though believe that earlier diagnostics could save some lives... there is a tipping point surely between whipple / no whipple and I said that to dad in mid December but he trusted the NHS would do the right thing by him. I am not saying the outcome would be different but there would be peace of mind knowing absolutely that the wait did not exacerbate the situation in any way.

I am going to cut and paste much of your post if you do not mind and send it to the cancer clinic manager and see what she says. I will cut out any personal bits and let you know the results and we will see if our hospital wants to engage as well.

xxx

[Dandygal76]

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

[Guest]

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

[Guest]

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

[WifeampMum]

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]

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]

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