A forum for any other issues around pancreatic cancer

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Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Fri Dec 23, 2016 9:03 pm

Hi Ruth,

Yes do contact your friends. I think we have to go for the clinical emergency status. Louis got his colonoscopy within 2 weeks, received a CODE RED radiology report then scans and more scans, followed by ordering the wrong biopsy procedure but it was 11 weeks in total before we got the confirmed biopsy diagnosis! We did not see an oncologist until week 12. One of the points I made was that during this time no medication was being issued to deal with his pain, no referrals were made to palliative care, no benefits could be claimed, I could not stop work to care for him, and nearly three precious months of his 3 to 6 months of life prognosis were wasted. The outcome would have been the same but he would have not been so exhausted, would have had better comfort and we could have granted him his wish to go to Italy one last time. These things are extremely important never mind the early treatment required for those who are younger and fitter to give them precious time.

Good luck!

Miriam

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Hospital Diagnostics Review

Postby Veema » Sat Dec 24, 2016 11:04 am

I remember our surgeon telling us that Nige's tumour had probably started around 2 years before it was detected. Nige was diagnosed quite quickly after going to the doctors with his pale coloured stools, he became severely jaundiced soon after that. The surgeon also said that although the tumours grow slowly at first, its a doubling of cells that makes it grow, so it eventually reaches a critical mass when it's next doubling as it were takes it beyond treatable if that makes sense.

It great what you are doing, Marmalade, I keep meaning to write to the CEO of our trust outlining the clinical failures at the end of Nige's life...again, I know the outcome wouldn't have been any different, a few more months maybe, but he would have been much more comfortable had they listened to my concerns and given him an ultrasound to detect the ascites which they were still denying was there 2 days before he had 7 litres drained off his abdomen.

Vx

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Sun Dec 25, 2016 2:08 pm

Hi V,

Oh yes, do send feedback. It's all about raising profiles but I am keen that everyone knows I am not just complaining. I'm really don't think it changes anything. I think that helping hospitals and GPs see that swift diagnosis helps them too is the key. People need a reason to change, sometimes it's a kick up the backside and sometimes it's because it's better, cheaper and more efficient for everyone. Once they are onside you can then introduce some compelling emotional arguments for it being the right, humane and professional thing to do.

Much love m xx

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

Re: Hospital Diagnostics Review

Postby Wife&Mum » Mon Dec 26, 2016 7:30 pm

Some good news - the All-Party Parliamentary Group on Pancreatic Cancer (APPG) is just about to launch a special inquiry into early diagnosis.

Details here:
http://www.pancanappg.org.uk/appg-launc ... diagnosis/

They are calling for written evidence from a range of stakeholders including patients, carers, family members, clinicians, researchers, charities, policy makers and others. The deadline for written submissions is Friday 17th February 2017.

If Forum members have had a bad experience regarding diagnosis this seems like an excellent place to voice concerns and make suggestions.

W&M xx

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Mon Dec 26, 2016 7:36 pm

Brilliant W&M, exactly what we need and thanks so much for posting this link!

Huge ranks for keeping abreast of developments and sharing with us

M xx

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Hospital Diagnostics Review

Postby Dandygal76 » Wed Dec 28, 2016 11:36 am

I agree Marmalade that there needs to be evidence for change rather than just complaining and I think you have done so well to convey that. As you know I also avidly put similar questions to many consultants and I have found I can get them all to move quicker without complaining but with logical reasoning in writing but I have learnt this the hard way after 2 months from diagnosis to chemo. I really do believe that life can be extended with prompter treatment. What is a bitter pill for me is dad just missed the new 2015 guidelines. I think he would have been diagnosed in time for the whipples with the new adult onset diabetes guidance. That is a harsh feeling. x

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Mon Mar 27, 2017 3:44 pm

Hello everyone,

I hope you and your charges are having a calm day and that those of you who have had relatives and friends cross the divide can see joy in the sunshine and comfort in natures renewal.

This morning I have had my second review meeting at our local District Hospital and I am very pleased to say that tangible progress has been made.

Following our last meeting 3 months ago, we agreed to work on shortening the diagnostic pathway for suspected PC from the appalling 62 days maximum set by NHS guidelines. New guidelines are set to shorten this to 28 days so we had the advantage of HAVING to make changes at some point which lent weight to this exercise. Our working group target is a stiffer 2 weeks but we are not quite there yet!

At the first meeting we identified issues with training on use of the standard "Somerset" MDT software used for communications and ordering tests both within the hospital, and at specialist centres and, a lack of computers for this purpose. This was causing delays in tests being ordered after the meeting as they must be order by a doctor, and errors in the type of test requested.

Laptop computers are now in place for all attendees and training has been carried out. Funding for this came from NHS England who have a large ring fenced budget for team training. I was able to ascertain the criteria to access this and bring the details to our opening meeting. I am delighted that this small contribution has now lead to other successful applications for "team" training efforts throughout cancer services at our hospital. This has reduced average time to referral appointments by 1.5 weeks

We also agreed to review the appointments process to avoid multiple tests and reviews on different dates all of which were notified by post.

This is an ongoing project but we have made significant progress. At the first MDT review following indicative investigative tests, the specialist nurse now requests central bookings to make appointments with all required specialities for further tests (if required) consultant feedback and consultant reviews - this means that all further feedback, tests and initial oncology appointments could be gathered into a logical rapid sequence. The process of communicating appointment dates with patients is now by telephone not post. This needs managing because although we want to have as many procedures and meetings on the same day as possible to avoid starvation preparation, anxiety and tiring journeys, we also have to manage the communications in a way that minimises shock and confusion. This far it is being handled by specialist nurses but this takes time from clinic so some members of the central appointments booking team are being trained to make the initial consultant feedback appointments by phone. There is huge resistance to central bookings phoning appointments through to patients as they fear questions they can't answer. they prefer letters because they are impersonal. This is another area where the NHS England "team" training budget may be utilised. Just by the specialist nurses phoning the appointments through there has been an overall reduction in the diagnostic pathway time scales of 2 weeks.

The biggest impact on timescales is the organisation and departmental connectivity required to get the diagnostic and review meetings lined up in advance to minimise starvation preparation and number of trips. Departments are used to looking only at their own lists and clinics and to move to a process where they need to be cognisant of other involved departments is a big change. We are looking at and costing different approaches including training GI department administrators to perform this additional co-ordinating role for PC patients. It would be cheaper than using specialist nurses and doctors (although they would work alongside to monitor and manage communication with the patient) and may work on a wider platform for others.

The cost involved in these changes are minimal and are ones which NHS England will pay for. There is resistance from those who are battle weary, and there are many in there NHS, but with good leadership they can be pushed through and will pay dividends. I am assured by the team of consultants, nurses and administrators I met with today that they are seeing benefits through this project that they believe can and will benefit other patients and staff too.

The newly energised team are also organising a GP forum to look at referral pathways. They have done some analysis which has identified delays due to poor or insufficient referral information and patient history and, in some cases, patients being referred to the wrong disciplines entirely.

As to the discomfort incurred and errors made in my husbands case by radiographers, this has been addressed by a departmental investigation, some reorganisation of responsibilities and retraining of staff. I have been invited by the Director of Cancer Services to speak at a radiology training session about the patient and carer experience for elderly seriously ill patients.

I am impressed with the progress made as frankly, I thought it may just be a sop. What I saw today seems like genuine progress and new found enthusiasm to beat the incoming 28 day maximum for diagnosis rule. They also understand the possibilities of booking the first oncology treatment appointments in the chain so that the waits of several weeks can be negated but these require big working practice changes and flexibility to cancel appointments if cancer turns out not to be the issue or they are not required.

There are many patient communication issues to consider and iron out. For us it was fairly obvious what Louis issue was so although we didn't want it to be true, we were prepared to hear that a man in his eighties with complex health issues had a life limiting disease. There is no doubt that speed of diagnosis and commencement of treatment is incredibly important to the life expectancy of PC patients but we also have to recognise that some people are in shock to hear they may have cancer, think all cancers can be cured, go into denial or want time to get over the shock and consider their options, it is difficult to see how these conflicting needs can be achieved with a ticking clock.

Louis did not want treatment but the delay in diagnosis meant that by the time it came, he was too ill to do things he wanted to do and it meant that he was repeatedly put through distressing journeys and procedures followed by anxiety of waiting for outcomes at a time when he could have been enjoying what remained of his health. For those who are younger, earlier diagnosis means earlier and more options for treatment which in turns means better outcomes.

I'm sure I have missed things but if even one person gets their diagnosis and treatment plan quicker and with the bare minimum of hospital trips I will feel I have achieved something and the work will be to some purpose.

I wish you all well and keep you posted.

Marmalade xxxx

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Hospital Diagnostics Review

Postby sandraW » Mon Mar 27, 2017 6:39 pm

Wow! Marmalade I am in absolute awe of you, thanks so much for all your hard work, I am literally speechless, and that doesn't happen often I can assure you love sandrax xx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Hospital Diagnostics Review

Postby Proud Wife » Mon Mar 27, 2017 6:53 pm

Lovely, lovely post Sandra.

Knowing Marmalade as I do, I'm not surprised they have sat up and taken note. Apart from the fact they must have realised from the very first moment that M is a lady not to be messed with, every single comment made is true and fair and could in the future make such a massive difference.

Absolutely BRILLIANT Marmalade, Brilliant, very well done but most of all, thank you. If all your hard work can help just one family avoid what we've been through, that would be fantastic in itself.

Lots of love xx
PW

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Hospital Diagnostics Review

Postby Didge » Mon Mar 27, 2017 9:16 pm

Absolutely amazing, Marmalade. Thank you so much. This will undoubtedly mean the difference between life and death for those in early stages x

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

Re: Hospital Diagnostics Review

Postby Wife&Mum » Tue Mar 28, 2017 11:47 am

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
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hospital Diagnostics Review

Postby Veebee » Wed Mar 29, 2017 4:28 pm

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

Marmalade

Re: Hospital Diagnostics Review

Postby Marmalade » Wed Mar 29, 2017 5:10 pm

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
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hospital Diagnostics Review

Postby Veebee » Sun Apr 02, 2017 11:16 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Hospital Diagnostics Review

Postby Dandygal76 » Mon Apr 03, 2017 6:01 am

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