Can you make possible the loan of our expedition vehicle in return for some great sponsorship publicity?

I'm not 60 yet :-) but this is a great little piece that I managed to get published in a Romanian Newspaper this week.

http://www.romania-insider.com/group-of-uk-wildlife-students-start-journey-to-romania-to-raise-awareness-for-prostate-cancer/40818/

We are still looking for that elusive loan of the expedition vehicle. PLEASE rack your brain for contacts. Do you know someone who might be willing to become a very big part of our expedition, by loaning us this vehicle? Is there someone on your Facebook who you could link this to, or someone in your e-mail contacts? They will get huge publicity through the BBC and National Press (If they want it of course :-)

My E Mail address is dansencier@yahoo.co.uk

If you can help in any way, we would love to talk to you...

 We still need the 4x4 expedition vehicle, suitable to carry 5 of us and our personal and filming gear. The idea would be to borrow this vehicle from an individual or organisation and in return we would logo it to give maximum publicity. Because the BBC and other local media will be covering this adventure, this gives a high return to the organisation for very little layout.


If you have any contacts then please let me know, we are already following several hopeful leads but still need that magic phone call saying, "Yes, we would like to do this for you".


http://www.ft.com/cms/s/2/eca83348-0174-11e1-b177-00144feabdc0.html#axzz1cufCqNqt


Follow these links for the latest information!


http://www.romania-insider.com/private-owners-control-half-of-romanian-forests-while-foreigners-gain-larger-shares/39953?utm_source=Romania+Business+Insider+MAIN&utm_campaign=0ac1b35152-10_nov_201111_9_2011&utm_medium=email

You've come this far, please make a difference by donating now and getting your name etched on our wall.

A big thanks to Sally at 'ihelpuk' (click on this link to view...

http://www.ihelpuk.com/) for this extremely helpful article. We are getting lots of support from so many people and just this week, the University of Cumbria have assured us that they will give us backing with any resources that they are able to give. We are still awaiting that one magic contact who will come forward as our main sponsor and supply our vehicle. Regardless of the cost, it will be sold on our return, so the main sponsor will ultimately spend very little money; if any! You can help by forwarding the link to this blog to everyone you know. 

Thank you so much, best wishes, Dan

Please make a donation, no matter how small, it will really help!

It's all good news with our proposed expedition to Romania in May. If you can make a donation that would be fantastic and help us to make this a great success. (donation button to the right) 

Please contact me if you have any questions about Prostate Cancer, diagnosis or treatment. I had no symptoms when I was diagnosed, but I did go for the annual PSA blood test that most men don't bother with. You should make anyone that you love aware of this, they might be very grateful that you did one day! dansencier@yahoo.co.uk 

Here are the 5 expedition team members.....

Paul Mitchell

Ashley Howe

Robert Brumfitt

Ryan Deal

                                         

Daniel Sencier

http://www.cumberlandnews.co.uk/news/penrith-man-takes-prostate-cancer-campaign-to-romania-1.887910?referrerPath=news


Todays article in the Cumberland News. Please copy & paste to everyone that you know. It will take you a few minutes but could save lives.

 When I was diagnosed with Prostate Cancer on 18^th June 2010, I found out on the same day that I had been accepted onto a 3 year BA Hons degree at the University of Cumbria. I had to ask myself then, should I start this degree in September not knowing what lay ahead or even if I would die before I graduated. I decided to go ahead because I wanted to live so much. I thought, maybe my body would give up if I stood still, but if I steamed ahead that it might take the hint and decide to give me another 40 years!

As it turned out, I had surgery that November to remove the cancer, just 2 months after I had enrolled. Even though I had to have 8 weeks away from my studies, I still finished 1^st year only 2% under a 1st.

I want to inspire others to take this path because I am convinced that it is our own mental attitude after diagnosis that can be a critical factor in helping us through the darker days of our journey.

In May 2012, along with 4 other (very much younger!) students from my Wildlife and Media course, I plan to travel to Romania. We would like to make a documentary wildlife film, which will not only be about Romanian Wildlife in some of the oldest forests in Europe, but also about the beauty in nature which drove me on in my fight to beat Prostate Cancer.

My hope is that we can get the Prostate Cancer Charity in the UK to link with the same charity in Romania, a country where 95% of men are at an ‘advanced’ stage when diagnosed. It is vital that we raise awareness in both our countries of this terrible disease, which is so curable if detected in its early stages. 12,000 men die of Prostate Cancer in the United Kingdom every year and the number in Romania is far higher. Any money that we make from this venture will go to Prostate Cancer charities in both countries, but we will need help and sponsorship in order to succeed.

  

We will gladly give our time and professional skills, along with a total commitment to succeed. We will also be funding ourselves heavily from our student loans.

To date I have written to the following people and organisations and will continue to write to more in the coming weeks.

• Owen Sharp, CEO of the Prostate Cancer Charity
• Sir John Rose, CEO Rothchilds Group
• Andrew Jackson, Head of Wildlife BBC Bristol
• Liz Homewood, Producer of 'The One Show'
• Andrew Lloyd Webber, Prostate Cancer Victim
• Rowen Bainbridge, CEO Romanian Oil 'Aurelia'
• Professor Peter Strike, Vice Chancellor University of Cumbria
• UK/Romania Charity

Do you know anyone local to you who might be able to loan us a  suitable vehicle?

How can others help?

• ·      We will need a vehicle, possibly 4x4 suitable for this kind of expedition; maybe a people carrier or similar, capable of carrying 5 people with supplies. Of course we will be totally responsible for this generous loan.

• ·      We will also need fuel as we plan to drive from Cumbria in the UK to Romania and back, nearly 4,000 miles.

• ·      Do you have any contacts in Romania that might be able to help us?

• ·      Can you help us in any other way? Donations, kit, accommodation or even ideas are all welcome.

In Europe this year, nearly 250,000 men will die of Prostate Cancer. Most of those deaths could be prevented by early detection.

This Blog has been running for about 16 months, getting on for 20,000 hits and even now still gets 20 to 30 hits a day. On Sunday, for the very first time since it all started, the Blog had '0' hits. Many newly diagnosed people find me either through a search on Google, via Facebook or the Prostate Cancer Charity; that's great. When you are newly diagnosed you need to talk to someone and you have questions that your doctor can't answer or even understand. So if you have just arrived on here and think I might have gone away, don't worry, email me on dansencier@yahoo.co.uk and we can make contact in the way that suits you best. Remember, winning the battle that's going on in your head right now is your first step to the future that you very much still have.

http://www.youtube.com/watch?v=fa7gTDG0v3c

TEST Video Blog ???

Result just received by phone call from Addenbrookes ..........   <0.02


It's the magic number that everyone hopes for and I've had for the 3rd time since surgery. Just need one more like that in December and my visits to Addenbrookes will go from 3 monthly to 6 monthly. Fantastic.....yeeee haaaa!!!!!

Just had a lovely e mail from one of the Urology Nurses at Addenbrookes with a very detailed explanation that is worth sharing on the Blog for those interested in the testing process...

Hi Dan

Sorry you’ve had no luck with your result, and I have to say that I’ve just looked it up to find that the final result is still pending ….. but I am very confident that this will come back at <0.02 as usual.

What happens with the samples is that they go to the lab where they are centrifuged to separate the blood cells from the serum – the serum is the useful bit, so this is then tipped into another tube and the PSA reagent added, then a spectrometry machine will read the sample to get a figure.  For your normal, run-of-the-mill PSA level (i.e. the man on the street without having had surgery) this result is very quick to get, perhaps a day or two.  However, when the PSA is so low, (as yours is, reading at less than 0.1), the spectrometer isn’t always accurate enough, so the sample has to be further diluted and more reagent added, then re-read with another much more sensitive machine (expensive & time-consuming, so not done as a matter of course).  It is this second process which leaves us dangling without the final result, which is so frustrating.  It is only when they can fill the second centrifuge with approx 100 samples needing the really sensitive reading that they will turn the machine on, so if we’re lucky this can be the next day, or if not, we might have to wait 4-5 days before the final result gets entered onto the computer system…… and that’s where we are now.  However, because we like to work with a sensitivity of two decimal points, we always do this “super-sensitive” assay – some hospitals don’t bother, but we feel that a man with a PSA of <0.02 is absolutely fine, whereas if this figure starts to climb to 0.03, 0.04, 0.06 etc, we can detect miniscule recurrence at a very early date.  If we were to work with only one decimal point, we would lose that time benefit whilst your reading stayed at 0.1 (for instance) for ages, whereas in fact your PSA was slowly rising behind the scenes!

I hope this long-winded waffle helps you understand why the result is not on the computer system as quickly as we would like, but rest assured,  I will look out for it every few hours and email it to you (or text it to you) just as soon as I have it.

Phoned Addenbrookes this morning, they still can't give me my PSA result!! "The Registrar will call you later", I was told! I sent an E Mail to Professor Neil, asking him if there was a problem. Within an hour I got an 'auto response' saying he was on holiday, but shortly after that, his secretary Hilary called me. She said not to worry, the PSA ‘supersensitive’ test always takes at least 3 or 4 days to be ready and that if blood had been taken on Thursday, the result couldn't possibly have been ready by Friday! It would be today or Tuesday at the very earliest. So the secretary on Friday had simply lied to me, fobbed me off! Don't you want to pull your hair out sometimes? I feel a little better now, but what a stressed out weekend!  

Only 3 weeks until I am back at University and I'm really looking forward to getting stuck in again. I need to be occupied; I can't function unless I have my whole day full of things to do. I often wonder what I will do when my course finishes. But then again, why should I worry, because the end of the world will happen this year.... 

Pacal Votan, Mayan magician and prophet, is famed for the predictions and prophecies he made about the recreation of Earth on the 21st of December 2012, the “closing of this world age cycle” as he called it. Known as a Magician of Time he understood mathematics and numbers as the Universal Language and stated, “All is number, God is a number, God is in all.” Based on knowledge mapped by the ancient Maya through their calendar, Pacal Votan knew that humanity would become disconnected from the laws of the natural world and would become blind to their sacred interdependence with nature. You've got 107 days left; make the most of it my friends!

Went to Addenbrookes hospital yesterday for my '9 month since surgery' check up. I had a blood sample taken and I am now waiting for the result to be phoned through. I phoned earlier and the secretary said that, "It has been printed off, but needs to be finalised". What the hell does that mean?

If the result is still <0.02 then I can breath again for 3 months, and will not need to worry again until early December. If it goes above that figure, a thirty day course of radiotherapy will kick in shortly.

As it was an unexpected day out, we decided to treat ourselves on the way back and went to the Imperial War Museum at Duxford. What an amazing day if you ever get the chance. They were using the runway to test out some formula one cars, which seemed impressive until the F15 fighter roared into town, making those little car engines look like hair dryers! As we went from hanger to hanger looking at every conceivable type of aircraft, there was a constant flying display of other aircraft, out side of course, including a Spitfire! Beverley even got to go on Concorde! That was inside!

4.10pm and still no call from Addenbrookes, have they forgotten?


and I waited all evening.....no phone call......


Now I am trying to think what, "It has been printed off, but needs to be finalised" could mean!

Dear everyone...I've taken the plunge and now I'm on Twitter. Follow me at @cumbriadan

This Blog is over a year old now, over 120,000 words written and 20,000 hits from all over the World. I have to ask, what do I do with it now?

When I first started, it was a 'lifline' to me, a place that I could go at the end of each day to release my feelings. At that time, I thought I was dying and wanted to leave a little bit about myself for those closest to me. (it taught me who was!) I can look back and laugh about that now, but it was true!

The Blog then became something that many followed who were in a similar position to me, but several months behind, so that they could get an idea of what was going to happen to them. It features on many charity websites still and people still make contact with me, especially when they are first diagnosed.

Evolving again, it became a 'campaining tool' when the NHS decided that they wanted to shut me up, and as a result we have have made vast improvements at our local hospital. During that time, the publicity created via national press and television, raised awareness of Prostate Cancer throughout the UK.

Is it something that should now die a natural death, giving it all a rest while I carry on with my degree for another 2 years?

I know that I need a break from 'cancer', it has taken over my life for the past year and now that I'm possibly cured, should I just do a big 'THE END' sign and close the door on it all?

Is there anyone out there still listening? Well, apart from the NHS monitor team :-)

Below are some photos on location with the BBC's 'The One Show'. What a beautiful day with such fantastically great people; an experience that I will never forget!

Liz (Producer) Colin (Cameraman)

Ullswater from Martindale

Colin

Liz, Joe (Presenter) & Colin

Me with the Camera of my dreams!

I have been away on holiday, camping in Cornwall and Devon, what glorious places. The Moors, the coastline, the tourists and the constant drizzle of rain :-) Oh I loved it!


I have now exchanged several letters with the Trust over the past 2 weeks, I was going to put the correspondence all here on the Blog, but should I? You know when the Prime Minister is asked a question in the House, and a simple 'yes' or 'no' would do? Well you can guess what the replies are like.


I tried to put all of my questions in a very simple manner, often requiring a 'yes' or 'no' answer, but the replies often went into so much detail that by the time I had finished reading one, I'd forgotten the question I had asked!

We achieved about 85% of what we wanted up to the point of the protest anyway, and I suppose that went to 95% after the exchange of the recent letters.


The Trust have apologised in private to me but are completely unwilling to give a public apology. You would expect that, wouldn't you? Arrogance is a hard thing to kick off when you've had it for so long.

What now? We must continue to monitor OUR hospital in every possible way. The people who run it now still truly believe that it is THEIR hospital, and that we the patients are just an inconvenience that they have to put up with.


Along with my many followers, I will be watching and waiting to help others who might have problems at this and other hospitals. Along with the 1000's of supporters in this group, many who work inside the NHS, we can be ready to act in support of our community hospital, if the members of the North Cumbria University Hospitals NHS Trust step out of line again. Rest assured that there will be no complacency in that building for a good while.


Many of you met Patrick from 'Civility' at the demonstration. Have a look at this article on their website, you might need them one day.
Case #1 - victory for Dan!

I've had a response from the North Cumbria NHS Trust this afternoon which I consider derisory. At this rate we are moving towards a far larger demonstration than last time and one that will no doubt involve staff from within the hospital. I have set a date for Monday 22nd August and will inform the police that numbers will be in excess of 100 this time. I promised dialogue with the Trust before the next demonstration, so I will reply to their communication over this weekend. I find it hard to believe that with the support of both the local MP's, John Stevenson and Rory Stewart, and their own CEO saying that "this could have been handled very differently", that they now feel free to insult us with almost an 'action replay' of their first action plan. They are also not inclined to give a public apology! Why? I would if I had messed up as badly as they have!


I was at the hospital today on an appointment (9.40am). I was told that the Trust believe that "I can't do them any more damage than I have"! Do they seriously believe that this was about causing THEM damage? It was and still is all about improving our hospital; I don't care about them! If they still don't understand this then THEY must go.

I keep getting asked for these links but I'm not sure how to put them permanently on the top page! So here they are again....

The link to the BBC's 'The One Show' 7pm Friday (just the clip now, not the whole show)
http://www.youtube.com/watch?v=rW6xcv-3j9Y

BBC Radio Cumbria's report on our very successful demonstration outside the Carlisle Cumberland Infirmary on Monday 4th July 2011. 

http://ia600602.us.archive.org/27/items/RadioCumbriasCoverofMondaysDemo/RadioCumbriaDemo.mov

News & Star Editorial 

http://www.newsandstar.co.uk/news/cumbrian-ex-cancer-patient-stages-carlisle-hospital-protest-1.854587?referrerPath=home

  

A video  of my interview with the 'News & Star' outside the Cumberland Infirmary. 

 http://www.newsandstar.co.uk/news/cumbrian-ex-cancer-patient-stages-carlisle-hospital-protest-1.854587?referrerPath=home&resourceView=video&index=1#video

What's going on???

http://www.whitehavennews.co.uk/deputy-boss-of-north-cumbria-hospitals-trust-quits-1.853459?referrerPath=2.883

ITV Borders 'Lookaround' 

http://www.itv.com/border/cancer-blogger07951/

BBC's 'Look North' 

http://djoblogg.blogspot.com/2011/07/daniel-sencier-trust-demo-4th-july-2011.html

Local Paper

http://www.bbc.co.uk/news/uk-england-cumbria-14012599

Cumberland News 
http://www.cumberlandnews.co.uk/cumbrian-ex-cancer-patient-stages-carlisle-hospital-protest-1.854587?referrerPath=home


Daily Mail article (June)
http://www.dailymail.co.uk/news/article-2002329/Bullied-NHS-cancer-patient-complained-treatment-online.html?fb_ref=LikeButtonTop&fb_source=profile_oneline

Yesterday, I went down to meet Owen Sharp, the CEO of the Prostate Cancer Charity and Ruth Holdaway, the Director of Operations. The Chairman of our local support group, Jim came down with me on what turned out to be a very worthwhile day.
Whenever you meet someone for the first time, you can't help but imagine beforehand, what they might be like, and I suppose the titles 'CEO' and 'Director of Operations', had me imagining two very aloof, unapproachable people, turning up in a very big car and using wet wipes after they had shaken hands with me. Not at all! Owen and Ruth dived off the train at Preston and sprinted most of the way to the meeting, pulling themselves together as they arrived at the hotel. Then again you might think, well anyone getting off a train at Preston might want to run for cover!

They are very nice approachable people who seem to have a genuine and passionate interest in the success of the Charity and for the cause that it supports. In short, I honestly believe that they are on our side in every way.

What did we talk about? Just about everything imaginable and I don't want to go into a 10 page write up on it today, but a quick list would be.....

The PCC… How it links in and communicates with the NHS
Training specialist nurses
Training GP's
Conferences
Our own 'online community' of expertise
Skills available to the PCC within that community
Recognition for individuals within that community
The 'very good' and the 'could do better' stuff
Where the money goes
Prostate Cancer (everything!)
Involvement of Women
Help-lines
Fundraising
Support Groups

If you gave me an individual enquiry, these were all discussed and Ruth will be actioning if required and making improvements where needed. We talked about local support groups and how interaction could be improved between the PCC, especially in areas outside the reach of London and Glasgow.

Over the coming months I hope you will get to see some of the results of actions that we agreed on, some are only small and others a bit more 'ground breaking'. For instance, Owen is looking at coming onto a forum 'chat room' perhaps one evening every month so that you have an opportunity to contribute directly. Elise asked me to give Owen her Twitter details (nothing to do with chickens), she follows Owen and as the founder of our Ladies Support Group, she wanted to ask if he would follow her. Well before I had got home that evening, sure enough Owen is now following Elise. (As many of us do)

If you want to know more about individual questions that you asked then please e-mail me at dansencier@yahoo.co.uk or hook up on Facebook; I did cover ALL of the concerns and suggestions that you put to me.

Owen Sharp has just been in his position for 3 months and I was convinced after yesterday that we will see a more proactive charity going forward, with a team at the top who will be far more 'visible' and 'in touch' with us all.

Yesterdays meeting with members of the NHS Trust went ahead as planned. I met up with Jim, the Chairman of the local support group, and we talked over our aims before the meeting. Did we achieve them? Probably not, but we did make progress in building some trust and at least we have now opened a dialogue. But this had been done before last October and we let it string out until there was no string left! This time, now that the ball is rolling and we are talking to different people, we need to make sure that we reach a quick conclusion, in weeks rather than months.

After both sides had made their positions clear, and there was a very frank and open discussion, we all agreed on the next steps. The Head of Urology has looked in detail at my proposed action plan. He has commented on it in an e-mail to the Head of Governance, who will now redraw the action plan and pass it back to me for consideration this coming week.

If I agree to the finished article then it will be implemented and some of the suggestions may be taken up by the Prostate Cancer Charity, who I hope will try and bring some standard practice in throughout the countries hospitals. At the meeting, the Head of Urology pointed out that many of the suggestions had already become practice within the unit. He also said that the diagnosis of Prostate Cancer only started to take place at the Carlisle Hospital 2 years ago and that great strides had been made to improve the service even since I was diagnosed a year ago.

This, along with a public apology would satisfy all of my immediate goals.

We then still have the problem of the local imbalance of what the NHS Trust spend on medical treatment compared to what is spent on PR and legal fees. The NHS nationally have been asked to make savings of £20 Billion this year, to help pay for bankers bonuses and for the cruise missiles that we are raining down on Libya, amongst a vast amount of other bloody needless projects. We must make sure that the money we have left to spend locally is spent on nurses and not solicitors!

Throughout the past year I have learnt a lot about the public in England. The vast amount of people are not willing to do anything, regardless of what is done to them. I genuinely believe that if the North Cumbria NHS Trust had turned the Cumberland Infirmary into a greyhound stadium, and issued all households with a first aid kit, apart from my small army of 'diehards', nobody would have even complained!

Am I right? 

I will update you this coming week and again, thank you for your continued support.

From the hundreds of NHS staff at the Carlisle Cumberland Infirmary who follow this Blog, is there someone who would be willing to speak out anonymously and contribute to a major media project? 

Please contact me on...   dansencier@yahoo.co.uk  

http://www.telegraph.co.uk/health/healthnews/8668906/NHS-delays-operations-as-it-waits-for-patients-to-die-or-go-private.html

On reading this article in the Telegraph this morning, perhaps you can see what we are up against. Whilst billions of pounds are put aside to bail out the banking system and to continue to pay their massive bonuses, our NHS patients are deliberately being left to die? YES! My operation cost £20,000. If it had been delayed by another few months (I waited 4 months in Carlisle) and spread, the cost to the NHS would have been about £150 a year in tablets to control the disease, or if I could have afforded to go privately then it would have cost them nothing. The big WIN for the Government is when you die! Then not only do you cost them nothing more in health bills, your family pay to bury you, the government collect the inheritance tax and you don't get any more pension payments. Win, win, win & win!!!!

As a country, we can afford to launch missiles on Libya at £500,000 a time, and the cost of a single Tornado sortie, £30,000 on fuel alone, whether it attacks or not. When are the public in this country going to wake up and smell the accountants? Our doctors and nurses haven't got a hope of carrying out their duties; like us they are puppets in a game where, apart from the wealthy, we all lose.

Tomorrow I have a meeting with officials from the local NHS Trust. It is a meeting that I hope will help to improve the patient pathway for newly diagnosed Prostate Cancer patients at the Cumberland Infirmary. As I have a meeting in Preston on Wednesday, with the CEO of the Prostate Cancer Charity Owen Sharp, I am hoping that ultimately it will be an action plan that can be used to give guidelines to hospitals throughout the UK.

We must try and discover why the local NHS Trust quote that 95% of patients who are treated in Urology are happy with their care, and yet when Helen Kelly visited our support group, the figure was just 4%!!!

This is the action plan that would have satisfied me and other members of the local support group, had it been presented to us earlier this year…

1.    A notice will be displayed at reception stating that; ‘You will be sent a copy of all correspondence sent to your GP regarding your treatment, unless you specifically ask us not to send it to you.'

By doing this, it cuts out the possibility of the staff forgetting to ask the patient, and from feedback given at our support group, all our members would want to be kept informed.

2.     Mr Bashir apologised for not replying to Mr Sencier’s polite letter of grave concern. He explained that it was an oversight due to the pressure of his workload. He also apologised for not keeping Mr Sencier adequately informed about the progress of his case, causing unnecessary worry and concern.

When mistakes happen, a simple apology is usually enough, and this should become common practice at all levels.

3.     We are sorry that your records and scans were not available at your MDT meeting, and that nobody who was at that meeting was available to you, when you came for the feedback. We know why this happened and systems have been put in place to ensure that it cannot happen in the future.

Again, a simple apology and assurance would have been nice!

4.     Dr Sidek apologised for not introducing herself as the ‘Oncologist’ at your appointment. She now understands that a newly diagnosed cancer patient, on their first visit to the Radiology Department may need some guidance. This is now standard practice for all new patients.

Another apology and an explanation.

5.     After the complete failure of the PALS service in your case, a radical shake up has taken place, which includes closer monitoring and ‘mystery caller’ testing.

Why is PALS not tested for efficiency by ‘mystery callers’? It’s a vital service for when things go wrong and it should be tested.

6.     We are sorry that nobody at the hospital ever replied to an e-mail that you sent, but at the hospital we cannot reply to e-mails due to ‘unsecure networks’. We are also sorry that e-mail addresses are available to patients at the hospital because this does give the impression that they can use this as a form of communication. We also acknowledge that it would be a good idea to have an automated system which, when a patient does e-mail the hospital, a message is sent to them stating that ‘we can not reply’, rather than them thinking that someone is actually dealing with it!

This is 2011 and most hospitals in the country, and back street newsagents have e-mail. It goes a bit beyond belief that we have this system of confusion at Carlisle where patients can e-mail the hospital but cannot receive a reply, even to say that ‘we can’t reply’!

7.     We are sorry that you had to throw away the ‘help number’ that you were given, and now realise that the system we had in place was completely inadequate for purpose. There is now a modern voicemail system that can take almost unlimited messages. Also, realising the importance of ‘information’, especially in newly diagnosed cases, a very strict ‘pick up and answer’ system is now in place. We have backed this up by providing a list of other useful numbers in a simple easy to understand format. This not only includes your Consultant’s secretary & Urology Nurses, but also The Prostate Cancer Charity, Macmillan, The Local Support Group, PALS and as a last resort, if you think that the system is failing you, the Head of Governance.

Had I been able to talk to the Head of Governance or even knew of their existence, I could have contacted them when both my Consultant and PALS both failed to reply to me.

8.     Helen Kelly attended the local support group meeting on 1^st February.  She wasn’t too surprised to get a friendly but ‘hostile’ reception from the 25 members present because she had been invited knowing that there were problems. Only one member present was happy with his ‘patient pathway’, so we realise that there is a serious problem. She has promised to feedback your concerns to the appropriate departments at the hospital and will send you a detailed account of her proposed actions.

In reality, it was a meeting for the sake of a meeting with no feedback ever given. What did she learn? Who did she feedback to? When & with what results?

I would again like to thank the hundreds of NHS staff, patients and members of the public for the relentless support I have received throughout this difficult time. Like you all, I just want a better hospital.

Someone asked if I was going to request a public appology tomorrow. 

It would be nice, however I would be very suprised if it happened. To do that, someone at the NHS Trust would first have to realise that they just might have been wrong in some way. That I wasn't some lunatic who just decided to make a load of placards and spend 2 hours marching up and down outside the hospital because nothing was wrong! It takes a very strong, well managed organisation to realise it's own shortcomings, and I think that the North Cumbria NHS Trust still see me as a 'problem', that they just want to bury!

Yesterday was eventful! All the previous night I had been having a strange feeling in my chest. It was as though my heart was racing but not at a steady beat! When I woke up in the morning the problem was still there and I was feeling a bit light headed. I couldn't check my blood pressure, the machine just couldn't cope with what was going on; there was a samba band inside me!


I called my doctors for advice at 8.30am. Normally it takes a week to get an appointment, but 30 minutes later I was stood in front of her, a lovely person who sure didn't look old enough to be a doctor :-) but knew exactly what she was talking about.


She sent me to the nurse for an ECG and then 2 minutes later I was back with the doctor. My pulse was 140 and it was so erratic that the graph could have been a Lake District map. She said, "we need to get you to hospital". At that, I think my heart beat jumped another 20!


Within 30 minutes I was in the Carlisle Cumberland Infirmary! I thought, as I went into the building, thank God I've never criticised the doctors or nurses here on my Blog, just the under resourced system that they have to work in. But then hell, do they know that or have they just listened to the sound bites on radio and TV?


A lovely doctor called Jackie looked after me and I can't give my experience any less than 100% yesterday. I had my heart, liver and kidney functions tested and all sorts of other tests that I pretended to understand, and after over 9 hours and having seen a consultant, they let me go home. I have to go back for a heart scan as an outpatient, but all signs are that this will be routine.


After all that's happened in the past year between me and the hospital, it would have been very unfair of me not to Blog this experience, because the mass of people, like Jackie, are doing their best for us 24/7 and they are wonderful people.


Beverley of course was as good as she always is and no praise is high enough for her. xxx

Links to BBC Radio Cumbria today.




News item concerning the  local NHS Trust's £3,000,000 spent on legal fees and relating back to the legal letter sent to me.
http://ia700503.us.archive.org/30/items/BbcRadioCumbriaNews/RadioCumbria1.mov

Live on the Ian Timm's show at BBC Radio Cumbria today.

http://ia600509.us.archive.org/26/items/DanielSencierOnIanTimmsShow/RadioCumbria2.mov

Hundreds of you follow this Blog on a daily basis and thousands every week. As you all know, I have a meeting with some members of the North Cumbria NHS Trust on Friday 29th July. I am going with another cancer patient from my support group, and we will do our best to get an outcome that will benefit all of you and your families in the future.


However, it would be great if there was someone out there with a legal or relevant medical background who could come along to support us. If you are that person or know of someone who might be able to help, could you please e-mail me on dansencier@yahoo.co.uk 


A BIG thank you to the group of people who have volunteered for the next demonstration, and hopefully it will not need to go ahead. I will contact you all by e-mail with details.