When sorry isn't enough...

Coping with bereavement
1

I got a letter from the hospital where my husband was treated - or not treated. I learned shortly after he died that major mistakes had been made in his medical care. He should have been offered treatment for the brain cancer that killed him - although that treatment probably wouldn’t have saved his life, it might have given him another year or more and it would certainly have made him more comfortable both physically and mentally.

He was very distressed when he was told that nothing could be done. It was all so surreal - six weeks before he was told that we’d been planning a new life in a new house and developing two companies together that we hoped we could run for the rest of our lives. We had purpose and direction - neither of us wanted to retire although I was 66 and he was 71. We certainly didn’t want to spend our lives fiddling around with the house and doddering about as some people do.

The letter was profusely apologetic. It accepted that mistakes had been made and that for example I should have been able to stay with my husband in hospital because he was diagnosed as terminally ill 6 days after he was admitted.

It was written by a senior matron who had obviously had difficulty dealing with the medical staff. It apologised because the medical staff had as yet failed to answer the medical questions I’d asked, which I had been helped with by a medical charity.

I sent the letter in October - this reply had taken 7 months. I didn’t know this at the time, but my husband had a friend who is an oncologist, who has been asking questions too. So I guess that the medical staff have for some reason decided not to say anything.

Medical care on the ward my husband stayed in for most of his time in hospital has been criticised by the Care Quality Commission for failing to meet targets. I don’t know what these ‘targets’ are.

So I feel that I am on a merry-go-round. When my husband was on the ward, the nursing staff were terrific. They did everything they could to help him and facilitate his discharge. I know that theoretically medical staff and nursing staff should work together for the same objective - which is to treat the patient with dignity and respect and do everything they can to fulfil the patient’s wishes.

This didn’t happen to my husband. The attitude of the medical staff was distant and nonchalant - as if they were telling him that because his disease was rare it was almost his fault that they didn’t know what it was or how to treat it. He had numerous scans and tests which were not acted on promptly.

I just feel battered and bruised and very, very angry. I would like to know that this will not happen to anyone else. But as yet I do not.

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I am so, so sorry. That should not have happened and it makes it harder for you. We got letters of apology about the way my dad was treated 10 years ago. He had cancer and we fought, went into board meetings etc. when he was having treatment. We used all our energy to get him the treatment he should have had. We have letters of apology saying that they would learn from their mistakes. Whether they have I do not know but I do know how devastating it is when it is your loved one. My thoughts are with you.

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Dear Christie

I am so sorry, I really do not know what to say. This is just terrible and it would have been so difficult for you to receive this letter.

I am sure that CQC reports can be found on-line. I think organisations now work to save themselves rather than give families the answers they need and deserve.

All I can say is I am thinking of you. The loss of a loved one is hard enough without these extra challenges.

5

My partner lost his Dad on 4th January. His dad had been in hospital since November and my partner wasn’t allowed to visit.

He had multiple medical conditions but every time my partner phoned, he got a different story - if he was lucky enough to have his call answered. Most of the time the phone was picked up and put down straight away or simply not answered.

He received a phone call to tell him his dad had died but apparently had been fine that afternoon. He felt that the nurse was hiding something from him.

His dad had to have a post mortem. We don’t know why. He still has no cause of death and no death certificate because “these things take time”. Over 4 months???

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Dear NJL

If there is to be an Inquest then there is a delay at the moment. My husband died in September and his Inquest was only on Monday gone. I received death certificate on Tuesday.

Take care I understand your frustrations and desire to have answers.

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Thank you @Jules4,

Everything you say is true. What really gets to me is the number of people it’s happening too. The NHS was overloaded before COVID and now it’s almost like in places it has disappeared.

I’m not sure what to do. I have talked to lawyers, not because I want money but because it seems to me that the only thing that matters to NHS Management these days is money and not patients.

Thanks for your kind words, which have comforted me.

Christie xxx

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@Tillwemeetagain,

I’m so sorry that you’ve been through this devastation 3 times. You are right, it must be stopped.

I was watching the 2012 Olympic opening ceremony with my husband - it showed the NHS as one of our greatest achievements. At the time, we felt it was ironical, because we had private health insurance policies as a result of my husband’s work. The difference between the 2 sectors is remarkable. A private appointment lasts for 30 minutes, you see the consultant and s/he examines you, takes a written history, then explains in detail what s/he recommends and books the scans or whatever immediately.

With the NHS, you see the GP who can order basic tests, which can take up to a month. You then get the results and the referral, if one is necessary. You are then on a timescale dictated by the government - if cancer is suspected, you should be seen by a consultant within 2 months and get a treatment plan immediately thereafter.

That means 2 months of worry for the patient, whilst a very aggressive cancer can get significantly worse.

It’s not fair, because we all pay for the NHS. Private Insurance is not meant to replace the NHS, it’s designed to make treatment available at a time that’s convenient for the patient, which is why it is now so widely offered by employers. In theory, you should get the same treatment from both.

Many doctors - and I am lucky that my GPs are amongst them - are working hard to ensure all patients in need have equal access to health care. There is now some nonsensical rule in place that means that a consultant, after s/he reaches a certain age, has to pay a financial penalty to continue working in the NHS. These are the consultants with the most experience, who are most capable of seeing the difference between a patient in urgent need of treatment based on the referral letter, and a patient who can comfortably wait for 2 months or whatever.

What you say about people/patients being treated as such and not numbers says it all in a nutshell. That’s what we - my husband and I - believed too.

Lives are being lost because our NHS doesn’t work for us any more.

Christie xxx

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Hi @NJL,

That’s how it was with my husband. There were 3 different numbers for the nurses’ desk, there was no way at all of speaking to the doctors.

During the 3 weeks my husband was in hospital, I only got 2 phone calls from a doctor. Both were kind, and listened to me. Alas, neither of them was the consultant in charge of my husband’s care. I was asked to attend a ward round, but that was only to explain my husband’s facial injury. I was shocked at the deterioration in my husband’s condition within 6 days, but I wasn’t given the opportunity to tell them that.

The consultant was arrogant and disinterested.

My husband had a post mortem ordered by the coroner, which happened within a couple of days. I understand that at the moment, hospital post mortem are taking much longer, largely because of COVID.

I agree with you. 4 months is ridiculous. Maybe it’s time to write a letter asking why? In the area where I live, that’s the waiting time for a response to a request for an inquest.

Sometimes it can help to write to your MP. MPs are very good at getting answers to difficult questions.

My thoughts are with you.

Christie xxx

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Hi @Sheila26,

I’m sorry that happened to you. My husband died in September and as yet I haven’t had a response from the coroner yet about his inquest.

Thinking of you.

Christie xxx

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@Tillwemeetagain,

You’ve said it in a nutshell again - too much suffering, too little care.

Christie xxx

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Thank you Christie for your response and I’m sorry you’ve been through such a traumatic time.

Quite a lot of health professionals seem to forget that our loved ones are just that - OUR loved ones, not just a patient number. My Mum was hospitalised twice in the last few months of her life and the treatment she received from some of the nurses (some, not all by any means) was disgraceful and I wish I’d complained about them but at the time, I was giving all my time and energy to my Mum and I didn’t want her to have to go through any kind of questioning about it.

My partner rings the Coroner’s office every few weeks and is just told the same thing. I will suggest to him about the MP. They forget there are relatives at the other end of their procedures. It was bad enough for him that he didn’t see his Dad in the two months before he passed away and now he doesn’t even know WHY he passed away.

Thank you for concern and suggestions.

Nicky

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Dear Christie

I was initially told that the inquest would be the back end of the year. However, there was an error made where they misplaced some paperwork and I think to appease me they managed to ‘find’ an earlier slot.

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Oh, @Tillwemeetagain,

All this makes me so angry as a former NHS worker. When I worked in the NHS, before we even got onto a ward, the matron read us the riot act: ‘if you ever mention so much as a word about what goes on here, even on the bus going home, you are liable to be sacked’. And then a porky lecturer, jumping around as she yelled: ‘why is it that patients hide their piles from us? What do we have to do to make sure that patients know that piles are easily treated, but if they are not treated they become much worse, and can mask dangerous diseases like bowel cancer?’

Too much has changed. I don’t know what went wrong or why. Even in the 1970s and 80s there were arguments about money between departments. I remember a friend who’d had a motorcycle crash was in an orthopaedic ward having a plate removed, and the man opposite was apparently a patient from a psychiatric ward who had jumped out of a window. All hell broke lose when it was discovered that this patient had had a bleed on his brain - his parents were informed immediately and he was transferred to neurosurgeons to have the bleed dealt with.

The problem is that there are protocols in place. Not every nurse can remove a catheter - it has to be a qualified midwife. Patients often don’t know that. In a good hospital, they are given a chart that clearly shows what staff member can do which job. In a bad - or very busy - unit, they are given the easy answer. Possibly your friend was on a fluid balance chart, which means that all fluid in is charted against all fluid out, and the coffee - c.a. 200 mls of fluid, would have disrupted that chart, which is critical in post partum patients.

It is totally unacceptable that she wasn’t told this. That’s not an excuse, it’s an explanation.

I’ve essentially done nothing since my husband died, but we were both Good Sams, and I still am. So I drift around, when I can drive my electric car (which is on the blink), visit the GPs surgery, ask what I can do, and then try to do it. Last time I discovered they were out of pens, silly but very important. I did a whip round in the village and took then £5 worth of pens.

It’s a bit like the poem: ‘for the want of a nail, a horseshoe was lost. For the want of a horse, the battle was lost. For the loss of a battle a war was lost. And all for the want of a horseshoe nail.’

That’s our NHS and COVID. I am afraid that COVID has broken the NHS.

I have no idea what’s going to happen next, but I am thinking of you, and of all of us.

Christie xxx

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18

Ah Christie,

Not the same thing, but when my husband was in hospital, they called us into a side room and explained that things were not looking too good. The consultant then said that the medication he was on was far too much and he was going to review it. He said he would do it the next day. So sadly, my husband died a few hours later and I often wonder if things could have been different. Obviously nobody to blame, but I so wish his own doctors had reviewed this sooner - maybe, just maybe things could have been better, but I live with this now and still cry every day - almost two and a half years later x

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@Tillwemeetagain,

I am not saying that the NHS was right, I am saying they probably got it wrong again. I am just so sorry because it should never have happened, that the NHS was started to take care of us all from the cradle to the grave.

Now it’s not like that. It’s more like, if you survive the cradle, you are lucky, because too many don’t.

Christie xxx

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Hi @ Lesley18,

I don’t think that’s right. I think that, as you say, his medication should have been changed instantly, without waiting for another day.

I am sorry this happened to you.

Christie xxx

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Just recieved my husbands medical notes from the hospital , what i applied from. Doctors writing is unreadable in parts. The bits i can read are distressing and upsetting. We werent told about these happenings. The consultant was rude and sarcastic everytime we spoke to him. Nurses were lovely but have to go with doctors orders. He was doing fine according to his notes. Then consultants decided to stop his steroids, antibiotics, insulin, and protien shakes. When i spoke to him , he had no lunch, no jug of water or fluid drip. Put d.n.R on his bed. I was furious about this. Told them to remove it and was told by consultant, this is not casualty or holby city, we might break his ribs doing that. Still did not remove it. Furious. In the end they told him he was going to die and he got stressed and upset. Got out of bed and refused to get back in. They pressed crash button for help and sedated him. Upsets me so much knowing he was like that. He wanted to come home. They never told me. I read it in his notes. Cant stop thinking about him suffering.

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@Bubba,

My heart goes out to you. Your husband seems to have had a terrible time, and it must be worse for you reading about it afterwards.

Apart from the heartache, all you can do now - if you want to - is ask questions. There are organisations that can help, for example https://www.avma.org.uk. You could ask for a full explanation of why the consultant decided to stop treatment without informing you.

Also, please think about talking to a counsellor, a mental health nurse or a psychologist. I’ve done that - talking to the psychologist is really helping me.

Finally, please keep talking here. You are amongst friends who have gone through the same awful experience.

I am lucky in that I was able to bring my husband home - it was the nurses who helped me do that, the doctors seemed to want him to go to a care home, which would have been terrible. I am so sorry you weren’t able to do this.

It’s not fair, not what should have happened.

Love,

Christie xxx

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Thanks Christie,

Sadly, I’ll never know if it could have made any difference xx

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Thanks christie, i want to look further into it. What if is constantly going through my head. I cant understand why he wasnt high proriority with having diabetes and mild asthma. If only we could turn the clock back. Keep thinking all the negative stuff. I nagged him, made him eat healthy, did he know how much i loved him. Bad day.