Horrific Cancer Treatment

[Olaf-Rye]

I wish to share with you the horrid tale of how my father-in-law, a very decent and courageous man, was treated by the NHS since his diagnosis with gastric cancer. The whole affair here in Northumberland was sordid and I feel that the NHS staff was about as useless, indifferent and uncaring as they could possibly have been. I have not seen such poor treatment before in my life, whether in Scandinavia, Canada, or the United States, all places that I have lived and worked.

My father-in-law has just passed away from complications associated with gastric cancer. His treatment was, from the outset, absolutely horrific--at first the doctors barely passed him any information, and when we discovered that the cancer was incurable, they did not even bother booking an appointment for palliative care. I had to get information on the cancer and why chemotherapy was not an option from physician friends abroad and also had to book in the palliative care appointments myself.

Naturally, we wanted a second opinion, but the oncologist would not send this off because she felt that this questioned her judgment ! The nurse on the gastric team even tried to dissuade my father-in-law from doing this, feeling it was a waste of time. I have never heard of a doctor not acceding to a request for a second opinion. Ultimately, the registrar at the surgery had to write the request for a second opinion. From my experience with physicians, it is commonplace and well-advised to get a second opinion whenever a serious medical matter is diagnosed. The reputation of the oncologist (Dr. Mulvenna) was obviously more important to her than a patient asking for a second opinion regarding treatment and options.

It took nearly three weeks for an appointment with the palliative care team to be made. He was having difficulty eating because the tumour had spread to the oesophagus, and it was decided that a stent was a good initial option. When this was procedure was performed, the staff only gave him a local anaesthetic and he felt great discomfort. When the stent did not have the desired effect and he experienced a reflux of food, it never occurred to anyone that perhaps they should try other drugs to help him digest and to administer them by syringe. He never received any drugs apart from those prescribed at the outset whereas the Macmillan nurse said that there were many alternate drugs available. Instead, they wasted time and did not show the slightest interest in the case. The bleeding of the tumours was not addressed either, and only one radiotherapy session was booked.

The palliative care doctors, moreover, never even thought of telling him that a doctor came to Alnwick where he lived. Instead, they expected him to travel nearly forty miles to the nearest major hospital in Wansbeck. Only the secretary mentioned that a palliative care doctor visited Alnwick once a week, but by then it was too late.

At the hospital in his last week, a gastric specialist came in an told him that he had only weeks or months to live. This was not an opinion asked for, and her motive for saying this was strictly so that he would sign a waiver that would not require the medical team to resuscitate him !

Perhaps the cancer could not be cured, but the NHS made my father-in-law's last months much less comfortable than they could have been because they just did not care and saw him as a nuisance. They followed the guidelines and did the bare minimum for him, but the guidelines exist only to absolve the NHS from liability. The nurses, doctors, and everyone involved with the case did close to nothing and no one even thought of breaking ranks because they are too worried about their fucking jobs and pensions, and satisfying their political masters, than they are about people's lives. We can blame the system, but the attitude of the cowardly and venal scum within the ranks of the NHS must change too, if this system should be allowed to continue. Obviously throwing money at them is not going to change anything.

Moreover, we live in a strange world where guidelines and edicts from HQ are regarded as being in the best interests of the patients. It is like something out of Kafka or Orwell: the edicts and guidelines and 'best practise' codes have nothing to do with the best treatment of patients. This is how the government and their sycophants hide their ineptitude. I have never heard so many weasel words uttered to excuse the fact that they left a decent man to die with almost no support. If that is 'best practise', they can go fuck themselves. My advice to any of you facing cancer in Newcastle and Northumberland is to keep away from the NHS Trust here and do not trust the oncologists and their support staff. Also, if you can, get a private insurance and go to the US because you are condemned to death in the British Isles and furthermore will be treated like an unreasonable imbecile if you complain and fed weasel words at the same time to excuse the medical staff for leaving you to die and giving you sub-standard treatment.

[Sutherland]

I am very sorry for the appalling way in which your father-in-law was treated by the NHS. It is terrible, but I have to say that given my experience with the NHS, both for myself and for my father who died last year, it does not, sadly, surprise me. That's no excuse, I know, but I have become very disillusioned with the standard of care. I think the NHS does not exist any more to serve patients, but to serve the system. Unless one has private medical insurance and can get access to quicker diagnosis and treatment (granted it may not always be first class even if it is private), it's just a lottery as to what sort of care and treatment you'll receive under the NHS.

I can quite understand why you wanted a second opinion. Surely that's normal? It is also your right. I recently had a CT scan and something showed up which I was told was benign. However, I decided I wanted a second opinion and so had to organise this for myself by seeing a doctor at the Cromwell Hospital in London. I knew it was pointless approaching my GP because they would have regarded me as one of the "worried well" and put me down as someone wanting yet more unnecessary tests and opinions. That is the state it has got to for me, I'm afraid. I feel increasingly I have to bypass my GP's surgery as they're not interested.

Do you not have a case for medical negligence and a legal complaint, I wonder? I would not bother with PALS, the NHS based system - it would be a complete waste of time. I know it will not bring your father-in-law back but it depends whether or not you have the strength for a fight at this time.

[Olaf-Rye]

Many thanks for your message and suggestions. I am sorry to learn that your father suffered at the hands of the NHS and the general indifference of the staff. Nothing enraged me more than how the system does not care and those within it seem to believe that the system serves the patients and therefore they are doing the best for you by following their rules. So much of the treatment is now delivered by people that are worried about their jobs and pensions, followed by a concern for patients as a distant third.

I know what you mean about bypassing your GP for a second opinion. So many of these people are only worried about propriety rather than doing what is best and serving the patient. I hope that I have a basis for a legal complaint, because litigation is the only thing that the NHS understands. I will fight them on this because of the profound injustice of how they left a decent man to die with no regard for his comfort. It becomes impossible to trust a system when it cannot get its most fundamental task right: the comfort and best care of the patient. When I see the amount I pay in tax and how much public money the NHS swallows, there is no excuse for this incompetence. My feeling is to abolish it completely.

[jenny]

I'm so sorry to hear about your father's experiences.

It sounds as though there were failures on many levels in terms of management of care: lack of coordiation, lack of information, very poor communication and failure to put together promptly a proper programme for his management and care. There is no excuse for this whatsover - it must boil down to poor management, poor clinical leadership, indifferent staff and a culture of not putting the patient's needs first. All unacceptable. To have to wait 3 weeks for an appointment with the palliative care team is unacceptable.

Sounds like the consultant needs to get her ego problem in order so that she and the team can get on with the job of caring for the patient. I have found that the consultant's ego is a huge problem here in the UK - everyone is expected to tiptoe around it. It's all complete nonsense and detrimental to patient care. Of course you should obtain a second opinion - a competent consultant would welcome that.

My experiences of using the legal system to gain any kind of redress have shown to me that (if possible) the medico-legal system is even more incompetent and sub-standard than the level of care being complained about.

However, I do believe that complaints should be made to the hospitals involved and also to the health authorities in order to drive up standards. It seems very unlikely that your father's experience is a one-off. Rather, it is a reflection of the often low standards that we all put up with.

I do despair about the state of the NHS, although, having said that, you can sometimes get excellent care both on the NHS and privately. My mother was lucky enough to have private health insurance and she received very good palliative care at the Parkside hospital in Wimbledon, then later (on the NHS) at a hospice, for her final stages cancer.

But - why should good care be such a lottery? It should be available to all.

[Olaf-Rye]

Many thanks for your message and words of condolence. I am pleased to hear that your mother was treated well by the palliative care team and hospice. We do have good people in the NHS, but they are difficult to find nowadays, as I think the system ultimately drives them out into the private sector or sends them abroad. The consultants do have a terrible arrogance which, given their performance, is entirely unjustified. No one should decline requesting a second opinion, and as you said, most physicians I have come across exhort you to do this when the condition is serious.

The lack of co-ordination is also absolutely mad. When we see the billions spent on administration and the writing of guidelines in the NHS, you would think that picking up a telephone and arranging appointments would be quite easy. Even the will to do the most simple thing seems to have been lacking. I cannot believe the pretence of quality in the NHS--internationally, we have some of the worst standards of medical treatment for cancer patients, some of the worst prognoses, and no one envies the self-professed genius of our staff. A distant relative of my wife, a physician specialising in tropical medicine, uttered the most telling words about the NHS when the diagnosis was first made: she said get my father-in-law to the United States as soon as possible. If this is the feeling of staff in the NHS, and quite accomplished physicians, we must have a dire situation indeed.

Again, many thanks for your message and your advice. I am not sure about the legal avenues, as I know the NHS will claim that it followed its guidelines and therefore is not legally culpable for the incompetence and indifference of its staff. Nevertheless, I would contest that they have a moral culpability, but given the mentality of these venal, cowardly careerists, this would not cause them any loss of sleep as their serve the system to pay for their mortgages, cars, holidays, etc. This is why the NHS needs a root-and-branch reform, not just tinkering with elements and having money thrown at it in the hope that this will improve the system. Most people currently employed should be fired and forbidden from ever working in it again. Only then can we hope for improvement.

[gp2]

Firing the staff would not get rid of the culture of cost-efficiency in place of compassion. DoH puts paper and tickboxes ahead of patients. Billions are being spent(wasted?) on a computer system to enable private companies to access patient records so that ministerial advisors can join the boards of health-care companies. Patient turnover is highest priority. Staff get worn down by constant carping from above.