I am thankful to the Barnet Eye for posting the blog about my health issue . Not because I want my private business advertised to all and sundry but to challenge the Cameron Clegg lie machine led by Messrs Hunt & Lamb and fed by our dishonest local MPs Villiers Freer & Offord that the NHS is functioning well and improving under their stewardship, when absolutely nothing could be further from the truth.
I place absolutely no blame on anyone at the Royal Free for the cancellation of my operation at the last minute on Thursday 13/02, they did their level best to find me an intensive care bed but they were all full. When the surgeon visited me to explain why my very necessary operation was being cancelled, his distress at what was happening was equal to my own and that of my wife Ida who was sitting with me. It showed the measure of the man as a man of integrity and honour, a man genuinely concerned for the plight of his patient and frustrated at the position the NHS had placed him in, that he came to see me personally rather than send somebody else to do the dastardly deed says it all.
I was in absolute shock completely undermined completely devastated, I could not believe what was happening to me I was petrified and I remain frightened of what is in store for me at any moment. Over the last 6 years whilst having been misdiagnosed by my GPs with IBS I have rolled around shopping mall floors, on the pavement in the street on one occasion in the rain, on the floor of a pub, on the floor of every room in my house in the cinema and at a football match, I have passed out on numerous occasions with the pain and bashed my head on furniture kitchen units and on the staircase newel post, my life has been a living hell. A living hell I thought would one way or the other be corrected by surgery on Thursday 13/02, even if they could not remove the tumour they would have been hopefully able to alleviate the violent pain I get when I have an attack. Whilst I experience pain most days it is the violent attacks that terrify me and my family, and they creep up on me all of a sudden and it is absolute hell, it is completely beyond description and it is terrifying. But it is not IBS it is a primary Neuroendocrine Tumour inside of my small bowel feeding a mesenteric mass on the outside, that is causing the problems you have described so close to accurately. " Cameron & co can cancel the appointment but they cannot cancel the pain", but then again none of them care anyway.
The surgical team promised to rescheduled me within the next two weeks, and I am happy they did their best and as promised,and my surgery is now booked for Thursday 27/02. But this is not just the cancellation of an operation this is the continuation for at least another couple of weeks of a nightmare illness that is destroying my quality of life. It is the continuation of the constant fear of yet another violent long term attack that might last anything up to four or five hours, the fear of eating a meal in case it triggers off an attack, it is the continuation of my nightmare, the continuation of being left in limbo not knowing what the future holds and when and if I will be pain free. I am literally frightened to go any distance on my own in case I have an attack, I love to walk alone but am frightened to do so.
Therefore it is far more than the cancelling of an operation, it is taking away my independence my faith in the NHS,an institution I have always believed in and have learned to trust implicitly to protect me in and mine in our hour of need, an institution I have contributed towards for the more than 50 years of my working life. It has undermined me beyond belief and even now so many days later I cannot believe what happened, I am still in a state of confusion and despair, I am still in shock.
However what your blog raises is the serious question of how many people are out there rolling around the floor in agony thinking they have IBS when in fact they have a Neuroendocrine Tumour. If you Google " carcinoid tumour " which is a much shorter name for the tumour, you will note it says " often misdiagnosed as IBS ". Some GPs such as mine referred to it as an acute form of IBS probably brought about by the radio therapy treatment I had a couple of years after having my prostate removed due to cancer. There are far to many GPs out there that are not aware of what a carcinoid tumour is, or realise that the symptoms mimic IBS almost to the letter, even the medical team at Barnet General Hospital at first claimed they had no idea what the mass was because they had never seen anything like it, they even mistook the mass for the primary tumour before transferring me to the specialist Nets team at the Royal Free,who advised the mass was not the primary tumour, so I hope we can get the message across to both IBS sufferers medics and GPs. That people being treated for IBS who are suffering acute and violent pain or perhaps having hot flushes and or suffering shortage of breath from time to time, should be checked out in case they have a carcinoid tumour and not IBS. So I hope this publicising of my private business for all to see, helps others to realise the fact they might be far more seriously ill than they realise, and now have the opportunity to act on this information. If that happens making my private life so public will have been worthwhile. It should also be said I read just yesterday on Facebook, a heart ending story of a lady that had been treated for acute IBS for nine months when in fact she was suffering from final stage ovarian cancer, that now after months of the horrors of surgery and chemotherapy treatment is in remission.
I read your prostate cancer blog regularly and as you are aware all of my problems started with prostate cancer, to be honest I regret the day I agreed to have my prostate removed but in my case I was told there was no other option if I wanted to survive , my life in particular the last four or five years has been a living hell. I recently turned to the NHS in my hour of need and the Nets team and surgical team along with the nursing staff at the Royal Free welcomed me with open arms. They cared for me to the best of their ability and they were all as devastated as myself and Ida, that I was being kicked out on my butt to go back home after being ready for my operation for more than 8 hours, and after having been in hospital for over 24 hours dying from thirst for the majority of the time, and hooked up to a machine for most of the time.
In order to continue with my living nightmare rather than end my nightmare that day was planned to achieve, a day I had built myself up to with real fear and trepidation but at the same time hope. A mental endurance test I have to commence yet again, in order to overcome my fears of the operation and what the aftermath of surgery will bring, due to the cancellation I have to live this nightmare all over again. I repeat it is absolutely definitely not the fault of anyone at the Royal Free that no intensive care bed was available to me or at least two other patients on this the worst day of my entire life, the question is how many patients across the country are in the same boat under this awful incompetent uncaring dishonest headline hunting gimmicky government , that peddles lies and misinformation and would not recognise truth if it bit them on the butt.
Cameron Clegg Hunt Lamb Villiers Freer & Offord apparently consider my treatment to be acceptable. I consider my treatment as you have described it " Inhuman ", but when you add the number of deaths driven by the ATOS death squads forcing sick people back to work at the behest of the coalition government resulting in early deaths that with high numbers already that continue to grow. The numbers living in misery and poverty many of whom committing suicide due to benefit cuts and the bedroom tax, once again many of whom are severely disabled grow by the month. You begin to realise the likes of Cameron , Clegg , Hunt , Lamb, Villiers , Freer, & Offord , and our local councillors Cornelius and his gang who defend these policies with glee, that it is reasonable to assume they consider it all to be " A PRICE WORTH PAYING ".
They cannot pretend otherwise because even my daughter Susan could work out if you continually close down hospital facilities such as Chase farm A & E and sack nursing staff, then try to fit so many more people into Barnet A&E there will be a shortage of beds, intensive care beds, medical staff and nursing staff. The only people that can get a pint and a half of milk into a pint glass is Cadbury, and closing down Chase farm A&E and pouring a huge amount of the contents into Barnet A&E, is trying to pour a pint and a half of humanity into a pint glass. Add to that our smiling assassin local Tory council leader Cornelius who like Cameron and Pickles, brags about freezing council taxes and this year by way of a political election ploy he is cutting local council taxes by a paltry amount. But he is perfectly well aware that in order for him to freeze or cut local taxes, he has to cut local support services for the elderly the sick and the disabled and trash the skills incomes and working conditions of their vital care support staff which in turn puts them at risk and undermines their quality of life among other things. Incomes for these vital already low paid workers that are currently as we speak being cut by between 10% and 19% to pay for the political tax cut games of Cornelius and co, and by doing so he is leaving many of these vulnerable people in a state of limbo, with no other option but to turn to the NHS for help.
The end result being these vulnerable folk that should be being cared for in the community, are clogging the intensive care beds needed so urgently by people such as myself. This is no accident even the public service hating ideologue Cornelius and his motley crew who blindly signed a billion pound contract with Capita without even reading it are not quite that thick, they knows exactly what they are doing and they do it with relish and enthusiasm, with their inbuilt hatred of the have not's shining through their sickly grins.
More importantly this is a repeat performance of what occurred in the NHS under the Tories last time they held the reigns of the NHS, to them a few hundred or perhaps a few thousand deaths and the continuation of pain and suffering for perhaps many thousands of patients, even perhaps millions is a price worth paying. To achieve their goal of the complete privatisation of the NHS in order to line the pockets of the haves that donate to their party coffers, that is already happening right now, and to the detriment of those of us that rely upon the NHS more commonly known as the have not's.
People are dying and living in acute pain unnecessarily and the coalition turn the other cheek because they do not give a tupenny feck about the John Sullivan's of this world, like our local Tory councillors they have made it perfectly clear they are in power to represent the haves, and the have not's can go feck themselves.
There is a 14 million to one chance you can win the lottery if you buy a ticket a Tory policy, there is now a Tory/ Lib Dem policy that is fast becoming a no better than 14 million to one chance of getting an intensive care bed if you have a serious illness. Add to that the John Sullivan policy, if you are an acute IBS sufferer and suffer extreme pain, and or hot flushes and or shortage of breath, there is an approximately 14 million to one chance you have a very rare Neuroendocrine tumour and not IBS, so please do me a favour and yourself and ask your GP to check it out. With similar symptoms to IBS , there is also a slim chance you might even have final stage ovarian cancer.
The NHS is important to us all even you wealthy people with your private health insurance and the ability to fund such an operation, need the protection of the NHS in the event of the other 14 million to one chance, of a stroke a heart attack a serious accident in the home or on the highway or elsewhere. You need that NHS ambulance at the end of the telephone just the same as the rest of us, and you might also need a bed in A&E or an ICU at the nearest hospital, rather than be run around in an ambulance from one hospital to another trying to find somebody to care for you in your hour of need , potentially putting your life at further risk.
However the reality is local and central government policies are deliberately undermining the NHS, and putting us all at risk of no intensive care beds for our use in the case of an emergency, for reasons of ideology and dogma, not even the reasonable expectation of an A&E bed at your local hospital, which is truly worrying. By continuing to vote for these local Tories you are indirectly placing yourself and every member of your family and all of your friends at risk, so as the Barnet Eye says some of you must have a screw loose if you intend to vote for the Conservatives or Lib Dems at the forthcoming local election.
To use the tired and somewhat boring but truthful Labour mantra, " The NHS is not safe in their hands ".
Let's all wake up and smell the coffee in Barnet, this is not about politics this is about life and death this is about your life and the lives of your loved ones, and my life and the lives of my loved ones, accidents happen to us all no matter our politics no matter whether we are political or non political. But the reality staring us all in the face is something is very wrong ,and we need to set the lie machine aside and seek a full and open public enquiry into what is happening in our local NHS.
Last Thursday week after having spent more than 24 hours in the Royal Free hospital awaiting urgent surgery on a tumour and associated mass on either side of my small bowel wall, I was unceremoniously sent home and I am aware that same fate befell two other poor souls in a similar situation. With my example and the recent press coverage of the state of emergency red alert at Barnet General Hospital and closure of Barnet A&E coupled further with an apparent shortage of nursing staff and beds at both BGH & Chase farm , that I overheard the nursing staff discussing whilst in the recovery room at Chase farm on 2nd February. It is clear that the NHS in Barnet is in a state of crisis, that is why I am urging you to support my demand for a full and open public enquiry into our local NHS to consider the following issues and others that will be published shortly.
1, If there are not enough IC beds on a quiet Thursday afternoon, then there are obviously not enough beds full stop.
2, LBB has two major railway lines running through it, plus the MI, A1, A406 & A41 all major highways, what would have happened had there been a major incident on any of these routes.
3, With the Brent Cross redevelopment plus Mill Hill East, Colindale, West Hendon and a net rise of 105,000 more residents by the councils own research, if we cannot cope now we certainly won't cope in the future.
4, What happens if we have a major flu pandemic?
5, In 1966 we had three major IC Units available to 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 has been any planning provision for these future changes?.
6, How often are patients operations cancelled due to a lack of IC beds ?.
7, How much money is wasted paying consultants, nurses and on medication, due to operations being cancelled?.
8, Are private patients taking precedent over NHS patients, and being provided with IC beds during these emergencies.
9, We are told millions of GP appointments will not be filled in 2014, what impact assessment of that reality that will obviously lad to more overcrowding in A&E was consider before the closure of chase farm A&E.
These are just some of the questions we all need answers to and there are dozens more that are equally important to all of us, no matter the colour of your politics or the colour of your skin, no matter your religion or lack thereof. Where the NHS is concerned we are all in it together, and we need a full public enquiry to get to the truth, it is time the misinformation machine and the lie machines were set aside, and the truth of the crisis in our local NHS was sought for all our sakes via the only possible means and that is a public enquiry, no more lies, no more misinformation, no more obfuscation or ambiguity, just the simple untarnished truth.
With the support of the Barnet Eye I am writing to my local MP M Offord to seek his support for a public enquiry into our local NHS, so if you wish to add to the yet to be completed list of questions I will present to him, then let us know via the comments facility or directly to Barnet Eye the question you wish to raise. If you are a constituent of Villiers or Freer and wish to ask a question and would wish us to add the name of your local MP to the request for a full public enquiry, then we will be happy to oblige.
Something is very wrong in our local NHS, both the lie machine and the misinformation machines of local and central government have to be at least temporarily switched off, to allow a full public enquiry to seek the truth and not the fabricated truth we are being fed at this moment in time.
John Sullivan is a Barnet Resident, a disabled rights campaigner and now leading a campaign to call for a public enquiry into the state of the NHS in Barnet. He wrote this blog last week and asked me to post it after he had his operation to remove a tumour, an operation cancelled once due to the lack of intensive care beds. John had his operation on Thursday. As I write this he is still in intensive care, but hopefully has been moved to a recovery ward by the time you read it. Guest blogs are always welcome.