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Missed diagnosis resulting in unnecessary death due to only seeing the ‘cancer’ diagnosis.

She-she
Posted by
  1. I was wondering if any other families had experienced what we just have?
  2. My mum had incurable lung cancer but was due to be starting chemo in the coming weeks. 
  3. She was meant to have immunotherapy but the evening before her first treatment it was cancelled due to errors made that resulted in the unrealised fact she actually did not qualify. 
  4. The following week her mental health declined but she still had fight in her. 
  5. There is a whole catalogue of issues that I won’t go in to because they’re tedious but basically relating to her seeing several different professionals in that week who had never met her before and didn’t know her case, medications being changed without reviews etc etc. 
  6. As the family responsible for her care 24 hours a day we voiced our concerns but they weren’t heard. 
  7. The week of her health decline she had been seen by a GP who diagnosed a chest infection- all her vitals were normal but she was too weak to even sit herself up, had all but lost her voice, had short shallow breaths, was looking quite grey in colour and was too cold to take her oxygen SATs. 
  8. GP prescribed antibiotics and said she heard us saying how unwell mum was but just give it a few days on the antibiotics and see how she goes. 
  9. The same evening I called her Oncology department, I begged to take her in as she had deteriorated, I gave every sign and symptom and a history of her health and what this meant to me as the person caring for her, they said she didn’t meet their criteria, she’d already seen a GP and they wouldn’t accept her but if her temperature spiked bring her straight in or if I continued to feel concerned then consider taking her to A and E. 
  10. The opinion of the varied medical professionals that day made me feel that as a family member with no medical knowledge I was over thinking so a I didn’t take her to hospital as she didn’t want to go - I listened. 
  11. The next day there were some small signs of improvement so I felt reassured. However within 9 hours a GP had been asked to come and see her but they refused to attend because mum herself had not gone to the surgery to request to be seen and therefore she herself needed to call the surgery - she was too unwell but they didn’t listen. Fortunately the palliative care nurse attended, she didn’t listen initially because again she took mum’s vitals and they were all within a normal range and she wanted us to wait it out - then she heard mum cough and within 30 minutes mum was in an ambulance on her way to A and E. 
  12. Within an hour of her arrival at hospital her family were all called in to say goodbye and within 6 hours of her arrival at hospital she had died. 
  13. Her cause of death was a missed diagnosis of pneumonia and sepsis. If the hospital had listened to me and I had taken her in the night before we were told there is a chance she could have survived. 
  14. I have 2 issues my first is that I feel every medical professional that saw mum this past week, who had no relationship or understanding of mum’s history or current state of health, saw the cancer diagnosis and were blinded to what else was going on- had they removed the cancer from her health presentation would they still have said wait it out - I don’t believe they would, I believe they would have admitted her immediately because she looked so poorly - the cancer diagnosis blurred their view. 
  15. My second issue is that I was not listened to when I was saying how unwell she was - I was merely a family member, probably expected to be over-reacting but I knew mum’s health better than the majority of people because I cared for her day and night (along with my family members who were all fighting to be heard and on the same page). 2 GP’s, a palliative care nurse and the voice at the end of an acute oncology 24hr helpline didn’t hear my words because I wasn’t a medical professional.....but I was right and they were wrong and now my mum - a nurse in the NHS for over 40 years has lost her life unnecessarily. 
  16. Has any other family experienced this?

We have been asking for help for so long but kept getting pushed from one place to another with nothing forthcoming in any way. Now we all have to deal with a loss that could have been prevented because cancer got in the way of reality and family members voices bore no urgency and medical relevance to those who could have made the difference. 

daloni
Posted by

Dear

I am so terribly sad to hear about what your mum and your family have been through. It sounds a true ordeal from start to finish. I think your post detailing your horrific experience is incredibly measured in the circumstances. 

I have not had an experience like this - I have mostly had exemplary care from dedicated nhs doctors and nurses. If I was in your shoes, I would consider making a formal complaint. 

The place to start is the hospital PALS (patient advice and liaison service) and you can track them down via the hospital’s website. If this brings no satisfaction, the ultimate place for taking a complaint is the health ombudsman. More info here: 

https://www.ombudsman.org.uk/

Making a complaint is not easy but it can bring some resolution. I imagine that right now you will be dealing with the loss of your mum and the traumatic circumstances surrounding her death. So maybe a first step would be to investigate whether there is a time limit for complaining. That way you’d know how long you can leave this before making a decision. 

It might help to join the bereaved family and friends group on this site 

https://community.macmillan.org.uk/cancer_experiences/bereaved_friends/

We also have a bereavement expert available to answer questions online 

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_bereavement_support/

I hope this helps and please accept my deepest sympathy 

charlie1964
Posted by

Sorry to hear about your loss and what has happened to you but I agree you should complain via PALS.  This should be done ASAP as the facts are still fresh but you do have upto 12 months.  If you do not have a resolution then contact the ombudsman you could always speak to your local MP especially as elections are taking place.

i work in the nhs but I am disgusted and disappointed that this has happened to you, we are meant to be a caring profession.  You can also contact the independent NHS Complaints Advocacy Service.  They will appoint an advocate, the advocate can/will attend appointments with you, they will also review/support with paperwork received.  Check the nhs website on how to complain all info should be on there

i hope this helps.  Sending you my thoughts and best wishes at this awful time

She-she
Posted by

Thank you so much for your kind message. Mum was heartbroken at how the service she had literally devoted her life to had let her down. Her history of errors in the care she was given is quite disturbing to hear and for several years (previously she suffered bladder cancer) she refused to allow anything to be said against the NHS however more recently her opinion had changed. My sister works for the NHS and I only recently stopped working for them myself - all in different capacities so I understand and empathise with your feelings  I know there isn’t a person who works for the NHS on the frontline who doesn’t care about their patients but the ridiculous cuts in funding and unrealistic expectations of workload result sadly in situations like this.

As a family all we want is for our voices to be heard so what happened to mum can hopefully stand as a lesson to learn from and save lives in the future.

Unfortunately to add insult to injury we contacted PALs a few weeks ago when issues started to develop however they never got back to us and we were not offered any advice or support. With everything we were focusing on for mum we didn’t get an opportunity to follow this up.

We have actually got advice on the correct way to move forward with a complaint and have been offered suggestions for how to proceed but I really am so grateful for the validation and supportive suggestions offered on here.

Wishing you well and thanking you for taking the time to reply x

She-she
Posted by

Thank you so much for your validation and sympathy. It isn’t an easy time and this most definitely is not something we want to be thinking about but I can’t bare the idea of another unnecessary death x