A forum for family, friends and carers of pancreatic cancer patients

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Chris011
Posts: 2
Joined: Sun Oct 09, 2016 9:31 pm

Advice needed on how to speed up referal times

Postby Chris011 » Mon Oct 10, 2016 9:52 pm

My uncle was diagnosed with primary pancreatic with secondary liver cancer 4 weeks ago. He has had a telephone discussion with a consultant with a basic treatment plan involving chemo & palliative care discussed. Since then he's been waiting to see an oncologist to set up his treatment. He has been told that the disease is terminal but obviously he's really concerned how long things are taking as he wants to understand what treatmens he might have access to extend the time he has left.

Does anyone have advice or suggestions regarding how he might get things moving more quickly? xx in London is his regional Pancreatic specialist unit (he lives in Kent). What's the fastest / most effective way to get referred to this type of unit as he's keen to get specialist advice and treatment.

Any advice / help would be very much appreciated. Thank you

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

Re: Advice needed on how to speed up referal times

Postby Wife&Mum » Mon Oct 10, 2016 10:55 pm

Hi Chris,

So sorry to hear about your uncle's diagnosis and I can understand how upsetting it is to have to wait so long to see an oncologist.

I can't offer any advice as my husband's pathway on diagnosis was very different, but I'm sure that the PCUK support line can help with your query. Their contact details are:

Freephone 0808 801 0707
support@pancreaticcancer.org.uk

and their office hours are 10 am - 4 pm, Mon-Fri

I hope your uncle doesn't have to wait much longer for his appointment and I wish him all the best for his treatment.
W&M

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Advice needed on how to speed up referal times

Postby Dandygal76 » Tue Oct 11, 2016 9:59 am

Hi Chris,

Sorry to hear about your uncle. If it was me I would have a letter in the post today, special delivery and for 9am tomorrow morning to that consultant expressing the delays are not acceptable in terms of getting treatment, that they are now outside of NHS guidelines (I am sure it is 4 weeks but will check later), that they are causing immense psychological damage and that the earlier he gets treatment the better outcomes there are in terms of overall survival. A lot of consultants do seem to react if you put things in writing and I would ask for an explanation of delays in writing back.

I am quite forthright and nuts with my writing though and I would probably add in to that if I do not have a treatment appointment within the next week I will seek it privately until it becomes available on the NHS and then attempt to claim the costs from them, which given the position he is in can only be claimed retrospectively. Not sure a claim would succeed but it does also seem to make them move.

Also, have they allocated you a Macmillan nurse. Dad had one at the hospital who was really excellent and he could e-mail direct.

I am not saying any of the above would work as it depends on the consultant and hospital but it has succeeded for us before.

I am rushing out the door so will revisit this post later.

W & M has best advice though - give PCUK a call.

Have you also looked at clinical trials?
Last edited by Dandygal76 on Tue Oct 11, 2016 11:08 am, edited 1 time in total.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Advice needed on how to speed up referal times

Postby Dandygal76 » Tue Oct 11, 2016 10:10 am

Before I rush... most importantly stay polite and calm in the letter. I know how hard that is after 4 weeks since diagnoses but it will get your further if they cannot write you off as overly emotional.

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

Re: Advice needed on how to speed up referal times

Postby Wife&Mum » Tue Oct 11, 2016 10:15 am

Cancer waiting times guidance can be found on this CRUK webpage

http://www.cancerresearchuk.org/about-c ... -diagnosis

"Waiting to start treatment
Everyone agrees it is unacceptable to wait too long between a diagnosis of cancer and starting treatment. In an ideal world, people would start treatment within a month of being diagnosed. The Government have set waiting time targets in England and Wales for treating cancer patients. Waiting time targets set by the Scottish Government are the same. The current targets are

No more than 2 months wait between the date the hospital receives an urgent GP referral for suspected cancer and starting treatment
Starting treatment no more than 31 days after the meeting at which you and your doctor agree the treatment plan
If patients have to wait longer, it should be because they choose to or because they need extra tests to fully diagnose their cancer. Most hospitals are meeting this target for most of their patients. In the UK, waiting times can vary depending on the type of cancer you have and the type of treatment you are going to have.

You will start your treatment sooner if your doctor feels that your treatment is urgent. Your doctors would not make you wait weeks for treatment if they thought it was going to reduce your chance of being successfully treated. It may help to let your doctor know if you are worried about waiting for your treatment. It is likely they will be able to reassure you that although waiting a few weeks for treatment is very hard, overall it should not change your outcome."

Read more at http://www.cancerresearchuk.org/about-c ... CrE5FRw.99

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Advice needed on how to speed up referal times

Postby Dandygal76 » Tue Oct 11, 2016 11:06 am

W&m in an ideal world yes all the consultants should work like that. But after dpa my dad's medical information and seeing the exchange between the macmillan nurse and the hospital it is not always so unfortunately. The macmillan nurse was clearly concerned with the delays that my dad encountered. We had to wait around seeing for op and understand delays around this but after told stage 4 we were placed in complete limbo which is why we went for private consult at that point. I have found the NHS consultant much more effective and decisive now I document everything with them. It really is different wherever you go. We did not hit that month target from final terminal diagnosis with no further procedures and it was only after pushing we got through to NHS. The stress over this time for them to react was horrific and very stressful. A letter never hurts has been my experience and writing things seem to move things. I am on phone in hospital waiting room and I am useless on it so hope that makes sense. X

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Advice needed on how to speed up referal times

Postby PCUK Nurse Rachel C » Tue Oct 11, 2016 5:07 pm

Dear Chris,

I’m really sorry to hear that your uncle has recently been diagnosed with pancreatic cancer and I can only imagine that this must be an incredibly difficult, if not frustrating time for you. I’d also like to welcome you to the forums, although I appreciate that it’s a place that you rather not be. I’m glad that you have found support already and I am sure you will find this a very supportive community to be part off.

Chris, please do not hesitate to get in touch via email and phone (details below- Support line is open Monday –Friday from 10am-4pm), should you want any further information into relation to referral times or how the Multidisciplinary Teams work.

Best wishes,

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

Chris011
Posts: 2
Joined: Sun Oct 09, 2016 9:31 pm

Re: Advice needed on how to speed up referal times

Postby Chris011 » Tue Oct 11, 2016 8:32 pm

Thanks to everyone for their messages and advice. Will be talking to my Uncle tonight to discuss way forward. Thanks again. C