Hospital Diagnostics Review

[Guest]

Hi all,

Some may know me from other threads on here during my husband Louis' illness and after his death. It has now been 13 weeks since he died and I've had the first meeting with the District hospital responsible for his diagnosis.

The diagnostic pathway in Louis' case took too long, caused unnecessary suffering and was peppered with system failures. I am obsessive about administration, getting copies, making notes of conversations etc and have been able to construct an accurate timeline. This has been invaluable during my discussions with the hospital both during Louis illness and beyond. My objective in communicating with the hospital MDT (Multi-Disciplinery Team) was to get answers to questions from those accountable and to propose a change to the pathway protocol and training for PC as an exception.

I had a phone call from the Deputy Directorate Manager for Cancer inviting me to a meeting with her and the Clinical Lead for Medicine and Acute Physician, the Consultant Oncologist, the Consultant Gastroenterologist and our specialist nurse (sister). The meeting was to discuss my issues and for me to give direct feedback to those people in the hospital who treated Louis and who have the power to change things.

The first part of the meeting was to state my issues in the order they occurred, what it felt like to us as patients and to examine as much evidence as we could to determine what went wrong, why, and the actions required.

There was no disagreement with any of the issues I raised, I have a letter from the MDT Lead and the GI Consultant apologising for most of the delays, the lack of skill and drugs knowledge of the person who performed the colonoscopy, the ordering of the wrong tests and the failure to communicate adequately with each other or us.

I explained to the meeting what losing a day or a week or a month meant to someone with a life expectancy of 3 to 6 months. I explained what waiting for appointment letters, MDT reports and test results felt like for the patient and the family, how worries about finances, pain and care can overwhelm us. It was clear that no one had thought about the fact that during the MDT pass the parcel, the patient and carers were not getting any benefits, nutritional advice, pain control or other drugs reviews because no one person at the hospital was responsible for the overall condition of the patient and they were a little shocked! I explained that while there were now many options in the armoury for most cancers and outcomes were improving, PC was different, less options available and diagnosis needs to be approached differently and a great deal faster.

The Consultant Oncologist apologised profusely to me at the meeting, said his behaviour towards us had been out of character for him and stated that this feedback would make him re-examine his tone and attitude. He apologised for not raising any of the things that could be done to help with pain should the situation change and for his unprofessional and brutal behaviour.

I presented my husbands case in two forms to show how, with a change of pathway protocols it could have saved us time, him distress and pain and the hospital money and resources.

I suggested that as soon as PC is suspected, (Code Red) in our case sometime between 28th January and 2nd February an appropriate biopsy, and a full body contrast scan be ordered at once, as same day appointments and that an oncology consultation and chemo start dates be also scheduled at that time. The oncology appointments could be explained as precautionary to ensure swift action if they were required and cancelled if the biopsy is negative. This would have saved several weeks waiting and worrying for the patient and family, it would also have saved two contrast scans and two MDT discussions and would have allowed chemo or surgery to proceed at a much earlier stage before the patient became too ill.

Having a senior person responsible for review and the overall care of the patient would save the costs of delays and aborted procedures. I was able to accurately assess these costs based on published salaries for various grade doctors, nurses and technical staff and costs previously billed to us for other CT scans at the same hospital.

Training in the use of electronic systems to record MDT advice and decisions and order tests (Somerset) was clearly inadequate as was the training and review for the colonoscopy technicians and medical staff. I was able to point out that substantial monies are available within the national framework of the NHS for Team Training and all that is required is for someone to make the case and claim. I am aware of several projects at other hospitals that have benefitted from these and the Deputy Directorate Manager (Cancer) who is responsible for providing resources agreed that my facts were correct and the money is indeed available. This was greeted with gasps of surprise from the clinicians and a spirited discussion took place on what other essential training might fit within the expression "Team Training".

They currently have 3 unfilled vacancies for GI consultants and the meeting certainly highlighted the possibility that funding for these had been cut too deeply and may be putting patients at risk.

I am sure that some suggestions will prove too complex or hard but when I left the meeting there was a degree of excitement and a willingness to revisit the diagnostic pathway for PC as an exception.

The Deputy Directorate Manager (Cancer) has agreed to pick up my suggestions and report back to me on the viability in 2 months time when the meeting will reconvene to discuss training progress, and examine the starting, base line data, so they can start measuring progress in shortening the diagnostic pathway.

I felt the meeting was cathartic and therapeutic but I am very aware that talk is cheap. At the very least I have set a cat among the pigeons and will definitely follow up with them in 2 months time.

I will let you know what transpires!

Marmalade x

Edited March 31, 2017 by Anonymous

[Didge]

Marmalade, you are WONDERFUL! To complain is one thing, but to show how real improvements can be made is quite another. It will have to come from the top otherwise it will peter out - you know, one person takes on board the urgency but the next says "Oh that can't be done that quickly etc." Let's hope some real change takes place and that other hospitals take note. xx

[Guest]

Hi Didge,

Thanks for the encouragement. To be fair some hospitals have quicker diagnostic pathways than ours but then ours was made worse because of system and training failures. Surprisingly Belgium has a really good record, earlier detection, better treatment management and longer life expectancy. As half our family is Belgian I am paying a lot of attention to the differences in approach but that is for another time.

I would also really like to see some changes at GP stage to treat sudden onset type two diabetes as highly suspicious and contrast scan for PC. I know many many cases where this has been an early indicator and has been missed. Louis had perfect readings and then one which was crazy. The lack of investigation and the dietary action we took continued to mask the PC for over two years…

M xx

[WifeampMum]

I couldn't agree more with Didge's observation of what a great thing you're doing Marmalade, and I wish you every success in your campaign to improve the diagnostics pathway for future PC patients.

I have a feeling that I've seen a recent article acknowledging the link between sudden onset diabetes and PC - if I find it I'll post the details.

W&M xx

[Guest]

Hi W&M,

Lovely to hear from you.

It is mentioned as a symptom on some sites but it doesn't seem to be at the forefront of GP's minds so I think anything we can do to remind them or push it up the agenda is good. The Dr actually said to us "I don't understand what is going on here as it has been fine at every test until now. It was tested 3 months prior to this sudden, very high reading and we have the print out of every test in the last 5 years - perfect, then whoosh! We moved immediately to a managed GI diet and it came down and stayed down until Louis was nearly at the end. Sudden unexplained changes should always be investigated. I've just been to another friends funeral and exactly the same happened with him, and DG says it also happened with her Dad.

M x

[Didge]

Rob developed diabetes in his mid 40s, 2 years before diagnosis of PC. But he was fat so wasn't investigated. He also had a severe bought of depression which can also be a symptom. But it was another 2 years of testing for other things that the GP became concerned that his mother has died of PC in her 50s. Rob would have flagged it up himself but his tumour was in the tail so had different symptoms. I try not to dwell on the fact that he might have been saved.

[WifeampMum]

The NICE cancer referral guidelines say this about PC:

https://pancreaticcanceraction.org/wp-content/uploads/2016/03/NG12-Guidance-20150724.pdf Page 14

"Refer people using a suspected cancer referral (for an appointment within 2 weeks) for pancreatic cancer if they are age 40 and over and have jaundice [new 2015]

Consider an urgent direct access CT scan (to be performed within 2 weeks), or an urgent ultrasound scan if CT is not available, to assess for pancreatic cancer in people aged 60 and over with weight loss and any of the following:

diarrhoea

back pain

abdominal pain

nausea

vomiting

constipation

new‑onset diabetes. [new 2015]"

With reference to Didge's latest post here, maybe they should include depression too. Also you've got to wonder how many GPs are aware of these guidelines, and whether the wording should be stronger than "consider".

W&M xx

[J_T]

Marmalade, what a fantastic job you have done. My husband, an ex police officer, was a stickler for diarying everything. I did have a diary whilst he was ill but was more about his day, drugs etc. I'm glad we have people like you with the energy and drive to pursue matters when inadequacies are apparent.

I take my hat off to you. Well done and thank you!

Julia x

Edited December 20, 2016 by J_T

[sandraW]

Marmalade I just want to add my thanks too, that sounds truly amazing,love sandrax xx

[Sandiemac]

What a star you are, Marmalade! Thanks to you there may be lives saved in the future and what a

memorial this would be for Louis.

My husband is another one where sudden onset diabetes occurred, and jaundice, with a normal blood test not long before diagnosis but fortunately we had a young GP who was on the ball.

Love, Sandie x

[Guest]

Thank you one and all for your fantastic feedback and encouragement.

I hope it will inspire others to give constructive feedback to GP's and hospitals as silence is often taken as everything being OK. I have been told that 'other people' have not had our issues, my response was, how would you know, what mechanisms are in place to tell you?

I am under no illusions that one meeting doth not a summer make but a second meeting is scheduled and at least I got clinicians and the finance people in the same room and gave them something positive to work on!

I am 100% convinced that the fastest and most effective way to improve outcomes for PC patients is not a break through in treatment (although that would be great) it is much earlier diagnosis. I believe that time and money spent on a full CT scan as part of a regular health screening plan would more than pay back the scan costs and would pick up a whole range of potential issues and negate several other tests. We know that most (but not all) PC tumours grow very slowly over many years and mostly only cause a problem when they have become difficult to treat. If identified early, the outcome becomes significantly better as more treatment options exist.

Thanks again for the encouragement

M xx

[Elaine123]

Marmalade that is fantastic and a fitting way to recognise Louis PC journey I have no doubt he will be spurring you on and looking on with pride . As to the comment that not many people have voiced those concerns it is true .....we should be challenging what we consider to be actions that impact on people's values and dignity because if we don't then that bad practice continues to be the norm. We are actually allowing the bad practise to continue by turning the other cheek And allowing it to happen. Change doesn't always sit comfortably with people because it's easier just to continue bad practice but I think the excitement you generated within that team can initiate it. So proud of you Marmalade well done...and thank you from someone who has turned the other cheek for too long , you have fuelled a small spark of change in me. Good luck with your second meeting.

Elaine

X

[Guest]

Thanks Elaine,

That's exactly it. I have been careful that it does not turn into a witch hunt, I can't change what is past and neither can anyone else but maybe, just maybe we can influence what happens in the future. I am told that there are averagely 7 new cases a week at this particular district hospital.

Much love,

M xx

[Justamo]

Marmalade, it sounds as though you addressed this meeting with dignity, sound knowledge, and an altruistic motive. I wonder how often this group of people has actually had feedback ? Yes, I know they do all these random questionaires and 'satisfaction' surveys as if patients were a new car or an electrical kitchen gadget, but how often do they get the nitty gritty of what their careless remark or unacceptable attitude really means to real, live people ?

I still carry the feeling around that people in authority must be right, especially if they're wearing a uniform or a stethoscope, but that's just my age and the era in which I was formally educated. I have difficulty in challenging one of these exalted beings, but of course Elaine is right, that's exactly what we should do, otherwise nothing will be done to improve communication or practice.

It will be interesting to get feedback in two months' time. You've done a good job Marmalade and we're all proud of you.

Love, Mo

[Ruthus]

Dear Marmalade. Well done in your fantastic efforts to bring attention to the diagnostic pathway and how this can be improved. It sounds like your constructive and informed feedback has really caught their attention and made them listen and reflect.

I was talking to my husband yesterday about wanting to be proactive and contact someone in authority or with the powers to make changes with pancreatic cancer and the diagnostic pathway. We actually have two friends one of which is an MP and the other who is very high up working in NICE (National Institute of Clinical Excellence). I am thinking of contacting them in the New Year with regards to PC and the diagnostic pathway.

I know that NICE have guidelines for every disorder and condition. With most if not all cancers I think the process is two weeks until the person has an ultrasound or scan from the time where they present with symptoms. As we know this cancer is not like other cancers and the words which stick in my mind are the words I read from an emminent Professor in Scotland who stated that PC needed to be treated as a clinical emergency. I am aware of a friend who unfortunately was diagnosed whilst on holiday in Switzerland. He had all the relevant tests on the same day and received the diagnosis on the same day.

I have read that with PC the cancer is initially slow growing but can then become very fast growing. Therefore no time can be wasted once is presents itself at this stage. I was admitted to a general hospital on the 31st of October. It took ten days too complete the relevant tests and for me to see a specialist for a biopsy. He looked horrified when he saw my notes that I had not been referred earlier. He was straight on the phone to the surgeon because at that stage he was hopeful it was operable.

It then took another pains taking 10 days until we received the diagnosis and fact it was deemed inoperable. This was because my case had to be discussed in the Wednesday MDTM which had meant another weeks wait. The gastro intestinal consultant on the general ward had told me all sorts of inaccurate information over this two week period. My own googling had raised my anxiety levels through the roof and the wait was intolerable. This is not like other cancers where there are reassuring stories and information out there. I was seen by the Oncologist on the 7th of December and had my first chemotherapy on the 14th of December, so six weeks after I was initially admitted to hospital.

I was told that everything had happened in the correct time frame and according to the current NICE guidelines for PC I am sure it did. However, this is what I feel needs to be changed. I don't think this time frame is acceptable with PC and agree that same day testing needs to occur and discussion with specialist team and Oncology appt, chemotherapy start date should all take place over 1-2 week period. You are right Marmalade that when facing a limited life prognosis the last thing you need is drawn out appointment waits.

They always say that early detection is the key. With my own situation I really don't know how it could have been detected earlier as I had no symptoms until I turned jaundice. The only thing that would have picked up on a problem with myself may have been a routine blood/health check. This would have shown raised bilirubin levels and my liver test would have been all over the place. I have kicked myself about not having a routine blood test as I am usually very health conscious and I had been feeling tired. The last time I had had my bloods checked had been in 2010. Maybe if people had a routine blood/health check annually this would be a good thing. Although costly surely it would save money in the long run with early detection and then less money spent on treating conditions.

I am aware that others have had symptoms which have presented before the diagnosis and these need to be more thoroughly investigated. Again surely it is cheaper to do the relevant tests and scans to rule out PC than the cost of hospital admission and treatment.

I will liase with our two friends in the New Year and see if there is anything we can do to make changes in the diagnostic pathway for this dreadful disease.

Ruth x

[Guest]

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]

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

[Guest]

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

[WifeampMum]

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-launches-new-inquiry-into-early-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

[Guest]

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]

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

[Guest]

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]

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]

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]

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