People’s experience in seeking a second opinion, when you feel fobbed off?

Arthuritis

This seems an ongoing issue of unjustified overconfidence in most professional fields (except lawyers, they know arrogance and overconfidence can come back to bite them😄).

Here’s an excerpt of a mother’s nightmare coming true, and her constructive efforts to make this right for all patients with legal backing.

“Even if you were to give the doctors the benefit of the doubt and say they were trying not to worry us, the result is that they did not give us any agency in demanding the correct treatment for our daughter – and that control, that overconfidence in yourself and your decision making – is absolutely fine if the system works perfectly, but the system is so far from perfect,” said Martha’s mother, Merope Mills, a senior editor at the Guardian.

Martha’s parents said their concerns that Martha’s health was deteriorating were not heeded, with doctors instead trying to reassure them – even as Martha’s condition worsened and nursing staff privately acknowledged she was at risk of death.

I suspect the whole story would have been buried if Martha’s mother was not a senior editor at a national newspaper.

In response NHS spokesperson told the BBC: “All patients and families are able to seek a second opinion if they have concerns about their care and, as professional guidance for doctors in England sets out, it is essential that any patient’s wishes to seek a second opinion are respected.”

What has been people’s experience in reality? Should there be a Martha’s law (As there is in Australia -Ryan’s rule) making it a legal obligation to offer an independent second opinion where the patient or their carers are concerned about not being taken seriously or the matter being more serious than the docs assume it to be vs just recommendation & best practice?

I have also found that nurses often have great insight despite not having that higher academic qualification, might they simply be better listeners or somehow able to sense when something is not right?

Full article in the Guardian, Google under “Parents of girl who died of sepsis in NHS hospital call for right to second medical opinion Mother of Martha Mills, who died after treatment failures at London hospital, releases report with Demos calling for new policy in England”

jamieA

Hi @Arthuritis

You've posed a really good question that I think is really difficult to answer. For myself I found that in the past when suffering a medical condition I automatically put my trust in the medical professional in front of me. I think most people would - you're suffering, you've no knowledge of how to relieve that suffering - and here's someone who is trained to do so.

However after what's happened to me over the past 3 years I've a different view. I don't think you can assume that all in the medical profession have your best interests at heart. I've met some really good compassionate people working in the hospitals I've attended but also a number who have been arrogant, dismissive and plain unhelpful. I've said before that I've learned that I can't be a passenger in my dealings with the medical profession I need to assert my position and my needs.

I've changed my rheumatologist and my GP in the last 3 years at my request and the difference for the better has been significant.

jonr

So glad you raised this topic @Arthuritis because many Arthritis sufferers complain about health professionals who don't or can't empathise or truly understand what we're going through or take every measure possible to avoid taking further action.

In my case, having been referred for a consultation with MSK I was taken through a series of questions I felt were asked in such a way as to illicit answers which met with a desired outcome: no further action to be taken.

I presented positively to the consultant, managing my symptoms well via physio, exercise, diet, meds and supplements but we came to a clash over my XRays which showed one of my arthritic knees to be in worse condition than the other. I said "maybe so but the other one hurts me more". This specialist was adamant he was right and I was wrong. I asserted that as they were my knees I was in the best position to assess which one hurt more than the other. His response was to tell me the consultation was at an end and there would be no further action. I said that was unacceptable, it should take for my condition to render me virtually paralysed before further intervention was necessary and if he wouldn't refer me I'd seek a second opinion. Well, that was a red rag to a bull - he said it would make no difference, that the NHS only operated in extreme circumstances, I shouldn't waste doctors' time and at 56 I was far too young to be taken seriously.

The call ended and I called the main contact number to make an official complaint which was dealt with by a more senior Osteotrician who had a totally different outlook than her colleague. Within a few weeks my case had been fast-tracked via Ramsay Healthcare, I'd seen a Surgeon, had an MRI and told I was inline for a double TKR. That was April this year and I'm likely to be having the 1st one done in October.

As @jamieA wrote, one can't assume there is one rule book the NHS follows, the people who work in it can exercise their own judgement at their sole discretion. It takes guts to challenge but it is definitely well worth it based on my own experience. It doesn't all go this way - a request to my local health centre for a change of GP was met with an invitation to change surgeries by the receptionist who can sometimes play God with patients.

Arthuritis

@jonr @jamieA Thank you both for sharing your experiences. I hope more people do so as well so it can be seen as not something isolated which can be dismissed as “Well, no one else has complained…”

Trish9556

Hi @Arthuritis

Doctors in the main are very good but, there are bad ones. Two personal case histories.

Background

I have lived with Epilepsy all my life since the age of 6 months when I went into a coma. I suffered with Grand Mal seizures every day and every night. All this time until the age of 14 I shared a bedroom with my elder sister who used to look after me at night before calling Mum and Dad.

Roll on to 1981

My sisters daughter, aged 5, suffered a seizure. A bad one and the first of many. When she was taken to hospital the doctor's said nothing wrong, febrile convulsions, no treatment needed. This continued despite my sister telling them they were wrong and she knew what she was seeing. The doctors still refused to acknowledge family history (Epilepsy goes through the family on my Dad's side).

Fast forward

My neice suffered brain damage and has never recovered. She is now 45 and living in supported living and has the intelligence of a 10 year old.

My sister refused after all the bad care her local hospital were providing for her daughter to be seen by the hospital or the consultants concerned and transferred her care to another hospital an hours drive away who agreed with my sisters diagnosis and helped my niece. She was eventually seen by a Doctor who knew me and the family history in Oxford as a child before attending a specialist school in Lingfield.

There have been many challenges over the last 40 years for my sister and my niece but the lesson is, if you don't trust what the doctor is telling you, tell him he is wrong!

I was lucky, as a child I was treated with the best care available and by the best doctors at our local hospital and had parents who fought for me, and taught me to stand up for myself and didn't molly coddle me when I was ill. I could have ended up differently however if the local education authority had had their way, they wanted to send me to what is now the National Centre for Epilepsy, which was very different then. The only reason I didn't is because I was the youngest of 4 children and our local infants school agreed to accept me on the understanding that my mum worked there as a dinner lady to be on hand if I was ill. It could all have been so very different.

I have another case of malpractice concerning me where our GP just kept loading me up with increased doses of pills and more pills to the point I was, as a 19 year old, taking 14 different drugs, three times a day. I woke one morning unable to stand, speak or see and having lost 3 stone in a month. Getting in to see my specialist three days later, he was horrified at the difference in me in such a short space of time since my last appointment and I ended up in hospital for six weeks recovering.

If you're unhappy with any treatment you receive, query it, ask for a 2nd opinion and don't hesitate to tell a doctor you think they're wrong. They're only human and like every other human they do make mistakes. I am now one of those people who queries every single pill/potion that I'm prescribed and want to know why I'm being prescribed it and what it's going to do and side effects.

Love n hugs

Trish xxx

Arthuritis

@Trish9556 Thank you so much for sharing your story, truly amazing level of courage, patience and determination. I do agree a lot of doctors are very good or at least good. Unfortunately they seem to vanish quickly out of the system. However “the system” protects and rewards bad doctors, and ostracises any good ones that dare to report bad practice, thus young doctors see and learn how to “conform” to the lowest denominator. The proportion of bad doctors, particularly senior ones that the young ones look up to however, do not think they are bad, nor do they accept that they could ever be wrong, in their own eyes, they ARE God, and God only thinks he is a senior consultant! The NHS does not have a mandatory system within each hospital for example, where there are monthly Morbidity & Mortality presentations so that adverse outcomes can be presented and peer reviewed. (M&Ms are Mandatory in the US) Here it’s a rare event, mainly for lip service, as we have seen when the press gets wind of a tragedy, there is more effort in burying the mistake than in learning from it, although the spokesperson always claims lessons will be learnt after each tragedy. Only to repeat it.

I agree more patients should ask for second opinions when they feel something is badly wrong, but what does one do when the prestigious head of dept has made the mistake, and his/her prestige attracts a lot of funding and his underlings dare not speak out against him? (A frustrated nhs consultant once said to me referring to this situation “Where there’s retirement, there’s hope”! )UK hospitals do not have a mechanism for referring to another hospital from a list for a second opinion, you have to be discharged, and start the referral process all over again. Few GPs have the courage, energy or expertise to speak against a hospital. In general it often feels like where a mistake has been made, there is no acknowledgement or acceptance of it by the med community, instead the patient is expected to accept the life altering consequences and stop making a fuss, except in the rare circumstances when the matter goes to litigation.

Your parents had a wonderful approach where they encouraged you to fight and stand up for yourself, which can be a very difficult thing to do when you are the patient and in addition to your ailment, you have to find the strength and energy to fight a system bigger than you. I know many who have given up, drained, and, were it not for forums like this, with supportive people like you, a lot more would have given up.

Trish9556

Hi @Arthuritis

I'm not sure it was any easier to change hospitals if you didn't like the treatment you were getting years ago, back in the time of the Ark people didn't have their own transport so were literally lumbered with what was on their doorstep. My sister, when fighting for her daughter, had a heck of a job transferring her care to another hospital after the brain damage had occured (and not acknowledged). She had to find her own consultant who would agree to take her then write to the local hospital who had been treating her and advise them that they were being removed from my niece's care - even then to be threatened with Social Services. Although it doesn't seem to be easier these days, with the benefit of the internet where anyone can research and review anyone else, including hospitals, consultants, nurses, etc, it's easier to find someone you feel you can work with and who will look after you. Of course there will always be those who escape acknowledging their errors and I don't think whatever happens they will always be around.

I know it's easy to say, but, if anyone has any doubts over their care, they need to let people know - write letters (we have the benefit these days of being able to draft and redraft letters before sending), copy these letters to your local MP if you have been unable to resolve an issue, speak to our GP's and contact local health authorities. It is in the interests of our GP's to make sure we are treated properly - if we're not, we don't get better and end up making more work for them! Of course you have to have a good GP and having now found one at our practice who is looking after me after a lot of complaining, it's nice to know there are still supportive GP's out there.

I know only too well it can seem like we are banging our heads against a brick wall and when we are at our lowest and nothing is going right, it is always worth while taking somebody along to consultations to stand up for us and bang that proverbial mallet down very hard if we're not getting the treatment we deserve.

Love n hugs

Trish xx