Rog T's Cancer Blog - Part II - Friday the 13th, The day of doom? The NHS crisis bites

This blog is part II of todays Cancer Blog series (read part one here). I urge all Barnet residents who are under treatment for Cancer to read this blog and complete the poll in the sidebar.

I am in a state of shock. Today I discovered something which I cannot quite comprehend. As I mentioned, I had my appointment changed from a face to face meeting to a "telephone consultation" at 11.40 (see scanned letter), so I arranged my day around this.

I planned all of my meetings & business commitments to fit in with this schedule. I had an important work related call at between 10am & 11am. The plan was have a cup of tea and chill until I got the call.

So at 10.40, I was in the middle of a call on my work mobile and the home phone rings. So I pick it up and sure enough it is the Urology department. I quickly had to end the other call. The one rule I have always had is that my health comes first.



As I mentioned, I had recently had an MRI scan and a PSA test that had seen a rise from 4.0 to 5.5. On previous visits to the consultant, he's shown me the scans and drawn diagrams etc to explain the diagnosis. I wasn't happy that this wasn't available as an option. So I started the conversation by asking why the appointment had been changed. The answer shcoked me. I was told that there was a huge backlog of appointments due to a lack of facilities and meeting rooms. To me this was shocking. Cancer patients are being denied the opportunity to have a proper consultation in Barnet. However great a telephone manner, how on earth can you be reassurred if you cannot see the MRI scan results? The person who called was not a member of the team I'd met previously (to my recollection) so how could I even be sure it was a qualified doctor? Now as it happens the person I spoke to seemed knowledgable enough, but as I mentioned earlier, I was seeking a degree of reassurrance.

So what was the news? Well they want me to come in for a full biopsy under general anaesthetic. Apparently this is a different kind of biopsy to the previous one. They take far more core samples and they do not access the Prostate via th anus. Apparently the side effects are pretty similar, but the risk of infection is far less. So not only am I having a telephone consultation, but we are discussing surgery for a potentially life threatening disease on the phone. For me this is disgusting.

This is the situation that the NHS finds itself in as a result of the current Tory lead government. Barnet Hospital trust effectively went bust and has been taken over by The Royal Free. The Royal Free have now put in place a huge cost cutting exercise, to remove face to face appointments and replace them with phonecalls, do discuss surgery with cancer patients. Now if we simply accept this, then what will be next? So I told the person I was speaking to that I wanted him to tell his management that I considered this highly inappropriate. I said that I wanted it recorded that I think that anyone getting results of tests, discussing surgery or anything else which is beyond the level of simply getting routine test results should get a proper face to face consultation.

So on to the results. Well he reassurred me that the biopsy was "just part of the protocol" and not related to the MRI reslt, I asked what the MRI result was. What I heard did not quite make sense. I was told that there was no change from the previous and that the rating was 3. Now previously I was told that the mass was undetectable. As the radiographer marks the scan, how can it be 3 if it's undetectable? As I wasn't there to see, how could I be reassurred.

As to the rising PSA? Well again "Nothing to worry about" as it is within normal limits. He stated that I should only be worried if it doubled. Well the thing is that it has. My first test in 2011 was 2.8. It is now 5.5 which is virtually double. I pointed this out. He said "That was 2011 and it has been stable since. He explained that the Prostate grows and this raises the PSA naturally.

So where am I? Well I have yet another procedure to be performed. I've been told that the MRI is OK and the PSA is OK. And I've also been told that my local hospital has not got enough meeting rooms to let me see my consultant.

When it comes down to it, my health comes first. If the government cannot run a health service where I can get to see my consultant, then we need a different government. I am angry, frustrated and worried about what the future holds for me and the hundreds of other people who are "on the waiting list" and are getting a phone call over the next few weeks. This is not trivial. Please complete the poll in the sidebar. It is anonymous. The more people who complete it, the stronger the message we can send.

Time for the Barnet Times to join the crusade for a better Health service in Barnet

What do you want from your local paper? I know what I want. I want a paper that stands up for local residents. I have a rather odd, possibly perverse view that the local press is massively important. I believe that a free press is a vital part of democracy. Local press is under siege at the moment. Papers up and down the country are shutting every week. In Barnet we have two, the Times Group and the Press Group. When I was a teenager, the Edgware and Mill Hill Times was an esteemed paper. You had to buy it and thousands of people did. The paper was a launch pad for the careers of some quite esteemed journalists.

Fast forward to 2014 and we have a rather unfortunate change. Wheras the then editor Dennis Signy answered to the papers readers and could take whatever editorial line he liked, now the paper is delivered to your home for free and it is the advertisers who are in charge.

If you click this link and forward to pages 34 & 35 you will see that Barnet Council take huge adverts every week - http://edition.pagesuite-professional.co.uk/Launch.aspx?referral=other&refresh=G0e24cD1wE08&PBID=77E23626-E666-4444-A056-8A0B5982DC80&skip= - now the good thing about this is that the Council is actually doing something useful keeping the paper afloat. The bad thing is that it means that, should the council wish, they can ring up the editor and threaten him with withdrawal of advertising revenues, if the paper carries stories they don't like. Does this ever happen? Well sadly, if it hadn't this blog would not exist. You see I used to write a blog on the Hendon Times. That was stopped because I wrote a blog exposing how Barnet Council had placed a Youtube video with a Nazi supporter making anti semetic comments on their website. Members of the ruling administration took issue with the paper for allowing me to criticise the council and I was sacked as a Times community blogger.

For those unfamiliar with the story, this is the blog which caused the council to get me sacked

http://barneteye.blogspot.co.uk/2008/10/barnet-councils-incompetance-puts-nazi.html

A certain notorious member of the Barnet Council Cabinet even boasted that he'd ended my blogging career (1.2 million hits later, I can safely say predictions of my demise as a blogger were slightly premature). Now for all I know, my little stint as a blogger at the Times was the only time that politicians in Barnet Council used threats to change the editorial policy. I have no idea whether Martin Buhagiar, the current editor ever gets calls. He tells me that the local Tories were rather cross when he printed a piece about some misfunctioning sprinklers in a council building. What I do know for a fact is that we have a constant stream of "good news" stories concerning local Conservative policies and politicians. Today we have two

There's this one about local Hendon MP Matthew Offord visiting a charity kitchen in India. Mr Buhagiar must love this story, because out of all of the stories in Barnet today, he's made it the "Editors Choice".
http://www.times-series.co.uk/news/11032944.MP_Matthew_Offord_spices_up_trip_to_India/?ref=var_0


The other story promoting local Conservatives is the one about Councillor Robert Rams spending a day in an "ambulance" promoting a grant of £28,000 from the "Big Society fund" to the London Ambulance Responder Service.
http://www.times-series.co.uk/news/11029030.Councillor_in_ambulance_ride_along/

I find this story truly disgusting. You see the NHS is in crisis in Barnet. Recently we've had reports of Barnet General A&E being locked down as there were no beds available. One report stated that there were 19 ambulances unable to drop off their patients.

To be fair to the Times, they did print one story about misdiagnosis and poor treatment in Barnet.
http://www.times-series.co.uk/news/11028452._She_was_the_light_of_our_lives____family_dog_dies_after_vets_said_she_was_not_sick/

This was the story of how a much loved family dog died after misdiagnosis. If you believed the Times this week, that is the state of the NHS in Barnet, grants to volunteer ambulence men and the biggest health story being a dead dog. Now don't get me wrong, I love dogs and I am most upset that such a tragedy should befall a family pet, but there is a CRISIS IN THE NHS IN BARNET !!!!!

Fortunately the Barnet Press seem to take the matter more seriously. Their top story is that of Edgware resident John Sullivan aged 71.

http://www.edgware-today.co.uk/news.cfm?id=6052

Mr Sullivan was misdiagnosed as having irritable bowel syndrome for five years, whilst a carcinoid tumour went undetected. When Mr Sullivan was finally diagnosed and the surgeon became aware of the agony Mr Sullivan was suffering, he was admitted to the Royal Free as an emergency. That was the Wednesday before last. Mr Sullivan was given drugs for 24 hours to prepare him for major surgery. He was scheduled to have surgery at 11am on the Thursday. At 6pm, having waited all day on an IV drip, he was told to go home on the tube, as no intensive care beds were available. The tumour causes Mr Sullivans bowel to go into violent spasm, resulting in him spending hours in agony writhing around on the floor screaming. Mr Sullivan is the carer for his daughter Susan, aged 50, who suffers from Downs Syndrome. In short, the whole family is being ripped apart. One of the reasons for the lack of IC beds at the Royal Free was because the hospital takes overspill patients when Barnet General is overloaded. When people need an IC bed, ambulances are diverted to the nearest available hospital. As a result, the closure of Chase FArm not only affects Barnet General, but every hospital in the locality.

There are many aspects of Mr Sullivans case that would warrent a story. There is the fact that Doctors misdiagnosed Cancer as IBS for five years. Apparently this is not uncommon for this tumour. Wouldn't you want your local paper to inform you of this. There is the fact that not only Barnet General is unable to take emergency patients since the closure of Chase Farm. Then there is the biggest story of all. The fact that the Coalition government is underfunding the NHS to such an extent that an elderly man cannot be given an emergency operation on quiet Thursday in a warm February. Think about it. In the Borough we have 2 branches of the Northern Line, 2 major high speed rail lines, the M1 and a stack of other massive roads. If there were no IC beds in Barnet for Mr Sullivan, there would be none had any of those major transport hubs had an accident a sudden influx of emergency patients needed treatment. Look at it another way, if you had a heart attack two Thursdays ago, there would be no bed for you. You would be on an ambulance trolley, screaming in pain, as they drove around looking for a bed.

Now I am sure that the Barnet Times didn't maliciously ignore the story of John Sullivan. I am sure that when the editor picked his selection of dead dogs and dopey politicians, he was acting with the highest motives. It must be a hard job running a paper in such a busy metropolis as the London Borough of Barnet. I am sure that it can be difficult prioritising sick pensioners over dead dogs, but hey get real. Which is more likely to change you life, being stuck in an ambulance, desperately trying to find a bed, while the driver scours London for a bed, or your pooch being misdiagnosed?

I don't seek any favours from the local press. I simply ask that they do their job and tell us the local stories that REALLY MATTER. There are some vital questions that Mr Sullivans treatment has highlighted

1. If there are not a enough beds on a quiet Thursday afternoon in February, then surely there are not enough beds full stop.

2. LBB has two major railways, the M1, the A406/A1/A41 etc, what would happen if there was a major accident on any of these?

3. With Brent Cross redevelopment, Mill Hill East, Colindale, West Hendon and a net rise of 105,000 residents by the councils own research, if we can't cope now, we certainly won't cope going forward.

4. What would happen if there was a major flu pandemic?

5. In 1996, we had three major IC units available for Barnet Residents, at Edgware, Chase Farm and Barnet General, now we only have one, yet we have a third more people coming into the Borough. Where is the evidence that there is any planning for provision?

6. How often are patients turned away due to lack of IC beds?

7. How much money is wasted paying consultants, nurses and on medicines, due to operations being cancelled?

8. Where any private patients being treated in IC beds during these emergencies.

Cuts to the health service do not discriminate. We are all at risk. the cuts have gone too far and we need a proper review to ensure that all Barnet residents, their children and their elderly parents are not left on trolleys outside A&E or turned away from life saving operations.

I ask the Times Group of newspapers to back my call for a public enquiry into the NHS in Barnet. This is not a party political matter, heart attacks do not discriminate against Tory or Labour supporters. Any one of us could need the NHS at any time. What is the point in the "Big Society fund" funding paramedics if there is no bed for the patients when they get to hospital. It is all very well our local MP going on holiday to India and visiting a soup kitchen. Surely he should be visiting the A&E wards every day and making sure that his constituents get the best possible treatment.

So I grovellingly ask Mr Bugharia to think again and give Mr Sullivans story and the issues it raises the dignity and prominence it deserves. If we can stop the NHS being destroyed by ill tought out cuts, it will benefit us all. Who knows who amongst us will need an IC bed tonight. It could be you, me, Mr Bugharia, my daughter, your mum or Mrs Beans down the road. Whoever it is, I for one, will not rest until they can be assurred the level of care they deserve. As far as I am concerned, it is the job of our newspapers to join the crusade for a decent NHS in Barnet. If they don't they should spell out why. If they say nothing, sadly we will have to draw our own conclusions.

The NHS in Barnet is in total meltdown - cancer patients sent home on day of life saving operations

NHS bosses discuss Johns treatment with his Dr

Regular readers of this blog will have seen many guest blogs by disabled rights campaigner John Sullivan. John is a passionate advocate of a fair deal for people with learning difficulties. What most of the readers will not know is why John has such an urgent mission and such a great anger. John Sullivan has a large cancerous tumour in his bowel. This was misdiagnosed as IBS for five years allowing it to spread and grow, to such a stage where he is in constant pain. At times the pain is so excruciating that John lies on the floor screaming for hours on end. The tumour causes his bowel and intestines to twist and go into spasm. When this happens, all John can do is lie in agony until the spasm passes. This happens most days. Despite all of this, John is more concerned about the future of his daughter Susan, who is 50 and has Downs Syndrome. Johns only real fear for the future is not for his own suffering, but that if he dies, Susan will be thrown to the wolves. He has dedicated his married life to trying to shield Susan from the world. No conversation with John about his cancer happens without him mentioning the fact that he has no choice but to fight on for Susans sake.

After years of misdiagnosis, last year, doctors finally identified the cause of Johns illness. He had an extensive series of tests and given the worsening prognosis, he was given a treatment plan. This involved monthly injections to shrink the tumour and a date was set for an operation. The surgeon informed John that there were two possible outcomes. If the tumour was not attached to significant organs, it would be removed. If it was, it would be left in, but detatched so that it did not cause the bowel to twist and spasm. This would alleviate the pain. The tumour would then be addressed with chemotherapy. Both options involve major surgery, with risks, but both would offer John a decent quality of life, in the short term at least. There would be no more rolling around screaming on the floor of ASDA when an attack struck. When the medical team became aware of the frequency and acuteness of Johns attacks, he was designated a clinical emergency.

On Wednesday, John was admitted for his operation. He needed to be admitted 24 hours early, as he had to be put on an intravenous drip of medicines designed to subdue the tumour. The doctors were aware that the surgery may cause the tumour to flare up, therefore it needed to be "pacified" (excuse my lack of medical detail, I have not been party to Johns treatment or seen his notes). Once the tumour had been pacified, John was scheduled to be taken for surgery at 11am on Thursday. He was booked into the Royal Free Hospital in Hampstead for the operation.

At 10am, I sent John a text wishing him well for the operation and telling him my thoughts and prayers were with him. I sat back and said a quiet prayer for John. I've never discussed religion with him, but if nothing else it made me feel better. At 18:14pm, over seven hours after the scheduled start time for his operation, I received a text from John. It was terse. "They have just cancelled the operation no intensive care beds available". I sent back a text. The next text I received was at 19.05. It simply said "on the tube now".

Eventually I spoke to John. The story he told was heartbreaking and totally disgusting. Basically he'd been kept waiting all day (with a drip in his arm) and at 6pm, the consultant had come down to personally apologise to him. He said "John, I don't know what to say, other than how deeply sorry I am. There are no intensive care beds available in the hospital today. Myself and three other consultants have had to cancel our operations. We can't do them if we don't have a bed".

Which leads me to the question "How can a large hospital in London, treating acute cancer cases, not have enough beds?" Well as far as I am concerned, the answer is obvious. The Government recently shut the A&E department at Chase Farm Hospital in Enfield. On Tuesday, I wrote this blog http://barneteye.blogspot.co.uk/2014/02/when-first-person-dies-due-to-queues-at.html detailing how ambulances were being turned away from Barnet General. These emergency cases were being sent to other hospitals. Where do emergency cases end up? In Intensive Care beds. So the only conclusion that can be drawn is that John Sullivans inhuman treatment by the NHS is the direct result of David Cameron and his government shutting Chase Farm A&E department.

Now I ask everyone to think this through logically. John Sullivan is not special. David Cameron did not ring up the bosses at The Royal Free and say "I don't like John Sullivan, send him home to die". David Cameron and his government have simply said "We won't fund the NHS properly". What this means is that it isn't just John Sullivan. It is everyone in Barnet, perhaps London, perhaps the whole UK, who could find themselves in John Sullivans situation. And if there are no intensive care beds at the Royal Free, if ambulances are being turned away from Barnet General, where will you be taken if you get run over, have a heart attack or any other form of emergency treatment. It is a statement of the bleeding obvious that when you are in need of critical care, the sooner you get to hospital and the sooner you are treated, the higher the chances that you will live. If the ambulance you are in is being turned away from all the hospitals in the locality, what are your chances of survival.

Budget cuts don't discriminate. It doesn't matter whether you are Tory, Labour or Monster Raving looney, if there are no beds, you will die. David Cameron and his government supported by local Tory MP's Theresa Villiers, Matthew Offord and Mike Freer, have allowed this situation to develop. John Sullivan has no date for his rescheduled operation. His consultant could offer no guarantee that when he is asked back, the same thing will not happen. The NHS in Barnet is in Meltdown. I was talking to John yesterday and he made a stark observation "The only successful thing the Tories have launched in the last 20 years was the national lottery. With that you have a 14 million to one chance of winning. It was so successful that they've decided to give you a 14 million to one chance of getting a hospital bed if you have cancer".

There is an even more chilling postscript to this tale. I asked John to write up his experience as a guest blog. He refused. He said "I am going to get pissed, because I have had enough. If it wasn't for Susan I'd have thrown myself under the tube last night when I was kicked out of the hospital". I got a phonecall from John at the pub last night. He'd clearly had a few and he said "listen to this" and passed the phone to one of his friends. The friend told me that he worked at Barnet General hospital and that apparently sixteen nurses had handed their resignation in, as a protest against the conditions under which they were working. Now I have no idea whether this was accurate or true, but I have no reason to doubt the honesty of the Johns friend. It strikes me that the NHS is falling apart.

Perhaps the saddest part of the tale was what John said happened when he arrived home Thursday Evening. His daughter Susan bounded up to him and said "Have they taken the cancer out of your tummy chief, I knew it would be alright"