Wednesday, 22 December 2010

A BIG WELCOME TO ANDREW as a follower of the Blog, a really nice guy who is going through the same process as me just now and who lives a little closer to Addenbrookes than I do! He had surgery the week after me, so it's good for us to compare notes sometimes on our progress.

My histology report back date arrived in the post yesterday, and it has been changed from 7th January to 24th January! That is 8 weeks after the operation, which does seem a remarably long time, considering that all the results are readily available within a fortnite. Why so long? I don't know. I have to guess that if the results were very bad, they wouldn't just leave me sitting here untreated for 8 weeks. So I have to assume that the results are so good that they are not deemed urgent, as any other thinking would just ruin my Christmas.

I've had a good week and the recovery continues well. All wounds just about gone and my body a bit more flexible. Only got up to the toilet twice last night and holding on well during the day also. Coping very well mentally too, but would love to have the pathology side of it out of the way.

John from the support group was around today, what a great guy. We talked about the hospital enquiry, our individual stuff and what we could do to further the local cause over the coming year. Also John has a great contact in Zambia at a National Park, where I am hoping to go for a few weeks this summer; it sounds an amazing place.

Favourite quote from 2010....Well it has to be from a lovely female friend of ours who we will just call J. "You know, we didn't spend all our time just shagging in the 60's, we drank lots too!"

So I have one daughter staying for Christmas...yeeees! First time in 24 years! Now that is a result! Though I did see number 2 and 3 only a few days ago when we exchanged presents and passengers in a freezing service station at Scotch Corner; and just may see number 3 tomorrow now that she can drive!

I may have a little job with McMillan in the new year; unpaid of course, but that's the future. It involves going to schools and talking to children about cancer in general. I get full training and travel costs so I am really hoping that that comes to fruition.

Update on Blog next will be before New Years Eve, but I would just like to say a massive HAPPY CHRISTMAS to everyone. Thank you for all your support through what has sometimes been a terrible 6 months, and thank you for giving me the inner strength to burst into 2011 with renewed enthusiasm.

Below I have copied the full minutes of the NHS enquiry to date. So read no further unless the fine detail is of interest to you. It is still ongoing, but as you will see, great progress so far.

Notes from the 2nd meeting with Mr Daniel Sencier at Penrith Hospital
Friday 17 December 2010


Mr Daniel Sencier (DS)
Beverley (support) (BP)
Helen Kelly, Head of Governance and Quality (HK)
Sheena Bossche, Complaints Manager & Note taker (SB)

HK made enquiries after DS who had had his catheter removed last week at Addenbrookes and has a further appointment on 24th January 2011 for histology and next stage of treatment.

Since the first meeting on 22 November 2010 Helen Kelly had carried out investigations into the issues and actions arising from that meeting, had spoken with staff in Urology, reviewed the medical notes and produced a timeline from receipt of DS’s referral from the GP into the Cumberland Infirmary, Carlisle

HK went through the time line and noted the times when process had not been robust.
This included;

28 May 2010
– Seen by both Mr Bashir (Consultant Urologist) and Miss Bain (Specialty Locum). Both doctors had written to the referring GP the same day informing of the outcome of the clinic.  DS not copied into these letters and GP provided no feedback to DS.
Usually proforma is completed and faxed to the GP prior to the letter. No evidence of this.
ACTION: HK to investigate the copying of the patient into letters to the GP and reinforce the process of communication following clinics.

DS was essentially happy with progress between 18 May and 18 June and felt he was being looked after.

DS stated he was pleased with the actions that had occurred between 5 July and 29 July   but he was not aware at the time.
ACTION: HK to raise this with the service lead and review the ongoing communication pathways.

DS added that he received no feedback regarding his MRI scan results and was never informed about the need for a bone scan until the appointment arrived.  He had been kept out of the loop adding that it seems his consultant and GP knew what was going on but he didn’t.

Bone scan performed on 12 August
HK explained that during the timeframe of DS’s care 4 – 5 weeks was the recommended waiting time and was a requirement to allow the biopsy tissue area settle.  New evidence suggests a timeframe of 3 – 4 weeks.  DS said this had not been explained.

13 August 2010 – letter from DS to Mr Bashir- no response received. HK admitted this is unacceptable.
ACTION: HK to investigate further regarding the lack of response

20 August 2010 – HK clarified that DS had been seen by Miss Bain and not a nurse as was suggested in initial meeting.  DS said that he was aware of this.  Apologies provided for misunderstanding.

DS's notes from the MDT meeting had not been available, and nobody who had been at the meeting was available either, therefore Miss Bain was unable to advise. She had printed out the MRI and biopsy reports but DS said she was effectively reading "blind" and was therefore unsure of options. HK said that the appointment would have been the appointment for DS to obtain his results and options after the MDT meeting. DS confirmed that although he had been given information that the bone scan was clear, no other information from the MDT meeting was available, though Miss Bain could not have been nicer in her attitude and helpfulness, given the situation that she found herself in.
ACTION: HK to review the process for the availability of patients’ notes for clinic appointments

HK confirmed that medical notes for that appointment indicated that there was no evidence of bony metastasis, DS was undecided as to which option but on balance was erring toward surgery.  Further written information had been provided to DS regarding the options and he had requested further discussions with the Freeman Hospital surgical team and the Oncology department at NCUH regarding his options.  NCUHT informed the GP of this and copied the letter to Dr Sidek (NCUHT) and Mr Soomaro at Freeman Hospital as the means of referral

15 September 2010 –DS’s letter to Mr Bashir of 13 August 2010 arrived in the PALS office. HK could find no explanation as to why there had been a month’s delay in this being received.  Issues discussed within the timeline regarding PALS.

23 September 2010 – Letter received from Mr Piez at Freeman stating DS had decided he wanted robotic prostatectomy at Addenbrookes – cc Mr UE.   DS wasn’t even aware of Mr Soomaro – HK explained that letters are always written to an individual within a department as better address to someone that just a department, that way someone would receive and pass on to a more appropriate consultant colleague.

24 September 2010 - DS had appointment with Dr Sidek but wasn’t aware she was the oncologist until the end of the session when he asked her who she was. 
ACTION: HK to feedback this to Dr Sidek and the importance of introductions at the start of a consultation.

During the investigation HK had spoken to Mr Umez-Eronini (Consultant Urologist).  He had been on leave at the time of DS’s decision to be treated at Addenbrookes but had made the referral to Professor Neal immediately on his return.

7 October 2010 – Professor Neal accepted referral and copied DS and GP into the acceptance. HK noted this as good practice

8 October 2010 – Original sample slides sent to Addenbrookes.

11 October 2010 – Samples reviewed.  Addenbrookes report stated “These findings are essentially in agreement with the original report”.

DS stated Addenbrookes said differently to him – that he had a Gleason 8 cancer and not a Gleason 7 (there is a fundamental different between a 7 and an 8).  HK had spoken with Mr Umez-Eronini and in simplistic terms had explained that samples were taken from different sides of the prostate.  Some areas were 3 or 4 with traces of 5 and when added NCUH had obtained a Gleason 7.  Apparently this is however subjective around the country.  Either way consultants always went with the higher.  DS explained that a G5 or less isn’t treated.  8 is the bottom end of “high”. 
ACTION: HK to speak to Mr Umez-Eronini and feed back this information. 

Discussion took place between HK and DS about the sharing of information with patients about the level of detail regarding their condition and that some wish to know every detail why others prefer to know nothing. 

DS stated that the MRI report from NCUH states the disease was clearly contained within the gland, but Addenbrookes have stated it had grown around the surface. 
ACTION: HK to review the report.

18 October 2010 – MDT Addenbrookes – robotic clinic review 2 weeks.

19 October 2010 – PALS officer rang DS at 13:58 with no reply and again at 15:40.  DS said he had a message facility and no messages had been left.  HK explained that often, given the nature of some cases, no details will be left as staff don’t know who will pick up the message. 

22 October 2010 – PALS officer had made a courtesy call to DS at 16:35 and this is what her records showed.   DS said this was after 21:00 hours at night.  PALS officer had informed HK that she would never be working at that time in the evening.  HK asked DS if the information provided in the timeline was accurate DS confirmed as correct, although he had received so many leaflets he couldn’t recall.
ACTION: HK to obtain further details from the PALS officer.    
DS indicated that he did not want to make much of this at all.

Email issue – DS not receiving responses to e-mail and being told staff are not permitted to use e-mail as a form of communication.  HK had spoken with IT department who said there is a risk to sending information outside of the internal NHS network as it was not a secure route. There is the potential for email to arrive at the wrong place. 
ACTION: HK to investigate further regarding the available communication channels.

BP indicated that it was good to see that things (timeline) indicated that matters were in motion during DS’s involvement with NCUH but a pity this wasn’t known until December 2010.

HK enquired if DS had known all along what had been occurring would that have made a difference.   DS replied yes definitely it would have provided him with a lot of reassurance.  However he would have liked his MRI scan results earlier.

Regarding the issue of the 5 week delay in his GP practice referring to Addenbrookes (DS now understood that the referral was in fact made by NCUH and not by GP practice) he had contacted Jenn Carroll, Acting Complaints Manager (PCT) not as a complaint but for explanation.

Regarding the perceived named contact for patients HK stated that within Breast Care the Specialist Nurse provided the initial point of contact and suggested that a  similar system for Urology. DS indicated that at Addenbrookes the nurse provided her personal work mobile number and accepted emails from patients.  Patients were also send copies of the details letters written about them and Mr Shar had also telephoned him at home.
ACTION: HK to discuss this with the urology specialist nurses.

HK enquired whether she had addressed and answered all of DS’s issues for him. DS felt that they had been. 

Issues from the previous meeting on 22 November 2010:

·      PALS issue
ACTION: HK to attend support group in February 2011.

·      MDT meeting – complete

·      Named person for treatment – urology nurse is the 1st point of contact
ACTION: HK to discuss this with the specialist nurses and make recommendations regarding communication.

·      Access to medical records – complete informed of the process on 13/12/2010

·      Referral time in relation to Newcastle – complete

·      Lost notes for clinic appointment on 20 August 2010 
ACTION: HK to review the process for the availability of patients’ notes for clinic appointments

·      5 week delay in referral to Addenbrookes by the GP
ACTION: DS to contact PCT regarding this, details given

HK asked, apart from agreed actions what would DS like to see happen now.

DS said to make things better for next cancer person.  HK suggested this had probably wider ramification and should be universal through all services within the Trust, not just with prostate cancer.

It was agreed that the main issues was the lack of communication.

HK said indicated that she has a plan for the increased provision of the PALS which will be implemented early January 2011

DS would like Urology answer machines at NCUHT to have longer tapes to leave telephone messages so there is less likelihood of them running out.

DS had provided HK with a protocol from Addenbrookes HK had shared this with the Urology team at NCUHT and confirmed NCUHT has a similar document.

The Chairman of DS’s self-help group had indicated HK would be welcome at one of the meetings.  It was agreed that John McCarthy would contact HK with available dates and times and for her to attend the meeting in February 2011.

HK summarised that today was a progress meeting there were still outstanding actions.  She agreed to contact DS during the week beginning 10 January 2011 with an update on the actions.  HK said she could meet as long as he needed to.  DS said that is would be nice to draw some conclusion.  He and his partner were doing this to effect change.

HK explained Care Quality Commission (CQC) had been informed of this case and with DS’s permission she would like to share the outcomes with the local assessor. DS agreed to this.

HK informed DS that the outcome of this meeting will be reported through the usual channels within the Trust.

The meeting closed at 11:10 hours.

Sheena Bossche
Complaints Manager

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