Please read this, I desperately need some advice

I just found out my mother has been diagnosed with cancer in 4 places, the hip, lung, stomach and not sure where else. I am devastated as you can imagine and also very angry!

My mother first went to see the doctors about pain and swelling in her stomach/ribs in Feb 2019, she had a CT scan and was told she may have costochronditis?  She has been in pain ever since. She has been to the doctors many times upto mid July complaining about the pain but has just been fobbed off over and over again, eventually they said she might have a blockage in her gall bladder so they sent her to the hospital. The hospital doctor told her that which ever GP sent her to the hospital didnt have a clue what they were doing and to start agin with their diagnosis since my mother clearly didn't have a blocked gall bladder (this turned out to be correct) but he never tried to find out what the problem was with my mother, just another fob off,. After a few more times at the doctors they booked her in for an MRI scan in a few months. My mother complained she was in too much pain she and couldnt wait that long so her GP pushed the hospital to bring it forward slightly. In the meantime she started to get a pain in a hip around late June to early July which got worse only to be told it now could be her lymph nodes so she would need a biopsy. She had another cat scan and a MRI scan and had to wait over 2 weeks for the results. Whilst waiting for the results her hip worsened and she could not move one leg. My father kept ringing the GP to come out and see her but they insisted they would not come to a home visit and he must take her to the GP. He hired a wheel chair and my mother was in extreme pain getting into the wheel chair and getting to and from the doctors. They gave her some more pain killers and told her to wait until after her results. The next day whilst trying to go to the toilet she felt a pop and screamed in pain. My father called the doctors immediately and they said she would need to go to A&E she was told there was no ambulance and that my father must take her again. Just as my father tried to get her in the car an ambulance did manage to turn up on the way back from another call. Straight away the medic said her hip is broken because one leg is longer than the other. Turns out my mother who has been fobbed off my her local GP's has been manouvering in pain on a broken hip for a few weeks!!!! whilst in hospital they took decent care of her but she got the devastating news that she has terminal cancer!!! yet no trace of cancer at all in the scan in february! i cant accept this!! Whilst in hospital her GP contacted her to ask her to come in for the results not even knowing my mother was in hospital already knowing she has cancer!!! The hospital doctor said her cancer cannot be cured but she can undergo treatment to hopefully lenghten her life. However they said they need to wait for her hip to strengthen before any treatment. Isn't this ironic? their lack of care contributed to my mother breaking her hip and now she cannot undergo crucial treatment because of her hip. My mother has been at home a few days after being released from hospital after her hip replacement, she is feeling stronger on her feet but is again being left in the dark about what is happening. Surely someone should be telling her of dates of when to start her cancer treatment. I feel the medical care given to my mother is disgusting and i really need some advise on what to do? I want to know if this is common practice for other cancer patients? I wish to take action and make complaints but am not sure how to go about this yet we are not after any financial gain.. Why after going to the doctors for 5 months with all the tell tell signs could no scans or anyone even suggest looking for cancer? they tell you that catching cancer earlier is key which she did only to be then fobbed off and ignored, and then to later be told you have terminal cancer!!!! I cannot sleep, my father is off work looking after my mother 24/7 and is not being paid by his work. He asked for a sick note to be told he cannot claim a sick note, only she can obtain a sick note for herself. So they are struggling financially and on top of this devastating news. Some one please help, any advise would be appreciated...Mark

  • Hi Mark so sorry about your mother, there's others on forum that were late being diagnosed, because symptoms look like something else but not so harmful, alot of people go to GP for something else and they find C as well,, i think you should complain very strongly about the doctors i know they have a difficult job and not much time but the times things are missed is to much, again sorry about your mother, 

    Billy 

  • Hi Mark. We are in the same position as you. My mum was going to the doctors as early as February but she kept getting fobbed off - told it was fibroids and not to worry about it. All the warning signs were there. Repeated doctor visits. Raised CRP levels in her blood tests. Extreme fatigue. Intense stomach pains. She ended up in A&E at the end of May/start of June because of the pains. She has since been diagnosed with endometrial cancer after being sent for scans on the back of that A&E visit. It's rare and incurable, and it has spread to the bone. We are waiting on CT scan results to see if it has spread any further, and she has an oncologist appointment next Wednesday where I guess she will find out prognosis and treatment etc. Like you I am devastated and absolutely furious. My mum has been failed by the people who should have helped her, and yours has too. Like you say, early diagnosis is key but it seems not to be uncommon for people to be let down in this way. I can't really offer any advice about how to complain, although I think that you should, as I don't know the steps to take. I just wanted to let you know that you're not alone in this although I know that's no comfort. Like Billy, I can understand that the doctors have a difficult job and not much time, but people's lives are in their hands. I'm very sorry for you and your family, and you all have my best wishes.

  • Hello Mark

    Your mums story is heartbreaking. We went through a similar fiasco. Too long a story to tell,but saddens me that others are still going through the same.

    A bit of advice, phone the Dept health & Social security and ask for PIP forms for terminal patient. This is fast tracked but you will need the form confirming from her GP. Dad can also claim the benefit for carers as he is her sole carer also get forms for council tax benefit sent out too. At least getting that all sorted may help take the financial situation out of critical. As dad isnt getting any paid leave from work he maybe entitled to claim other benefits.

    As a footnote I wish you best of luck carrying forward with any complaints, my complaints turned into my worst nightmare at a really bad time in my life.

    McMillan have benefits and finance advisers maybe you or dad could give them a phone. At least if you get the financials a bit better sorted then you can concentrate on mum.

    Take care & look after yourself too. xx

    Added to: Your mums specialists will be doing background planning treatment etc while she is healing from hip damage. Once they know she is ready and healed things will move quickly Im sure.

  • Hi, sorry to hear about your Mum, hugs for you.

    Please complain about the GP surgery, your mum has been treated appallingly.  This is the route to go, they must not be allowed to do it again. 

     Before making a complaint, you could raise your concerns verbally with either the GP or practice manager. If the concern you raised cannot be sorted out by the end of the following day, then you can make a formal complaint to the practice. Call 0345 015 4033 or visit www.ombudsman.org.uk for more information.
    If you click here you can find out how to raise concerns or complaints about a GP practice

    Then I would try a solicitor who specialises in this kind of thing and if you get compensation donate it to CRUK.   

    Good luc, 

  • Thanks Elowen

    All the best for your mother too x

  • Thanks Clara, this advise is very helpful x

  • Thank you tonid

    I have all the information I require and will start the process

     

    Thanks again to all those who left feedback x You have all een so helpful x