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Are Cancer patients neglected?

Chuckie
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Hi All

 

So recently, someone I work with has just started dialysis which she has chosen to do from home/work

 

I have noticed that she has been assigned a nurse who has been to her home already and come into work frequently to access her environment and how she is doing and for us to answer any questions. She also rings her up to see how she is getting on and finding it. 

 

While I find this wonderful and very supportive I can't help but think about cancer patients and their support from the hospital

 

Now I don't know about any other people's experiences but with my Dad who had Lung cancer it just seemed that they didn't really care, like it was almost a 'here's your first treatment at hospital, let's check you are okay for the first doseage. Now you have to take your dose from home and here's a little sheet about things you need to look out for, so we will see you in x amount of time' and that was it, just one phonecall after the first dose and no further checkups. 

The nurse who we met with in A&E after he died said ' it's like putting super strength bleach inside of you' so why with something that dangerous do they not provide patients with more support, especially during the first cycle. 

My dad thought he was fine and then the effects kicked in big time, except some of the effects I know now were not usual but at the time you just assume that its down to the chemotherapy and that's its normal because you only have a piece of paper to go by. 

 

Especially being lung cancer with some stigma that it's self inflicted.

 

Ehhhh it's just such a shame to see that the level of care there and being provided by the NHS but seemingly only to certain conditions and just another reminder of the what if's and feeling let down by the NHS like so many others. 

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    Hi Chuckie

    The NHS is under huge pressure from high demand for its services. People are living to an older age, there are 5 million more people in the UK since 2000 and there are more medical procedures available now. At the same time there is not enough money to provide all the extra doctors, nurses and equipment necessary. Apparently an extra 2p on tax to provide the first class service we would all like to see would not be supported by the public or polititians.

    I'm sorry to hear your dad had such poor care when he needed it most. My father also was failed however at the end the Mcmillan nurses and nurses from the local hospice were wonderful and helped my sister and I to look after him doing the things we were unable to. I was failed by a late diagnosis and a three month wait for treatment, due to lack of resources, which turned a simple low cost operation into £30,000 worth of treatment and now poor prognosis. A stitch in time comes to mind.

    However none of this is the fault of hard working dedicated NHS staff but simply a lack of resources. Each department has its own budgets and perhaps at your hospital the dialysis department isn't overwhelmed like the oncology department is due to the vast numbers of people with cancer. Kim

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    Hi Chuckie,

    Speaking purley from my own experiance, I have to say I experianced terrific service from start to finish. I had lots of visits including 37 trip for radiotherapy. I couldnt fault the service I recieved but I do feel a lot depends on the quality of the managers. If they show proper leadership, the staff are more likely to respond well.

    Take care best wishes, Brian.

     

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    Hi Chuckie

    I am always saddened to read when someone has not received the level of service from the NHS they deserve.

    I can only speak on a personal level when I say for the three years from terminal diagnosis my husband was treated so well at all levels. He had a caring consultant who in turn had two support staff who did just that. They were at the end of the phone (24hr messaging too) to answer queries between check ups. When he had palliative chemo the nursing staff were caring and informative and yes, he kept a diary (at their request) so they could monitor the effects between treatments.  I only wish his body could have coped better with the treatment. The palliative care team called on us at home as and when requested (though my hubby preferred not to talk about things to do with his illness if at all possible) and when the time came when he needed more care we had the help of the community nurses attached to our GP so that he could have his wish and stay in his own home.

    I just wish all areas of the country had the level of care we experienced. Regards Jules54

  • Offline in reply to woodworm

    Hi Brian

    I too received excellent care once surgery and treatment got underway, the team in charge of my care thought of every aspect of my situation and provided help and guidance. From surgical care to offsetting the effects of radiotherapy to the throat, jaw and neck, to nutritionist, the dental team, speech therapist who helped me with facial paralysis and taught me how to swallow. The nurses who monitored my mental and physical wellbeing to the knowledgeable oncologist who oversaw my treatment.

    The bit that failed was the time it took to get the GP to refer me to the hospital for an initial consultation 5 weeks, then the 3 week wait to get tests scans etc then the 2 week wait for results then the 2 month wait for surgery. 18 weeks is a long time for an agressive cancer to remain untreated and spread and grow. So a simple day surgery case which would have had a 99% success rate turned into multiple surgery, hospital admission, radiotherapy, scores of follow up visits and a not to good outlook for my future.

  • Offline in reply to kimchoson

    Kim, that is dreadful and must make you wonder 'what if'.  We are, indeed, at the mercy of the doctors and hospital staff.  

    I have never been offered any help or advice for what may happenin the future.  A nurse at my GP surgery said she would phone me once a fortnight.  That was five months ago and I havent heard from her since.  I have changed hospitals now with my first appointment next Wednesday.  So far during phone conversations they have been absolutely amazing, so very helpful.

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    You might be interested in my experience here because my wife was treated privately and in the NHS.

    Her first diagnosis was in the NHS she hasd a lot of fluid and very nearly died from a pleural effusion into her lungs that happened over the weekend and a lot of people were loathed to take action over the weekend - thankfully someone did. 

    You might think that was a symptom of a hard pressed NHS but the private sector hospital was similarly stretched at the weekends.

    I would also deeply like to slap that consultant for the apalling way in which the news was broken to us - we were leaving and the test results just came through to him and he sent one of his students around to us who stammered out - "We've got the results it's malignant - sorry" and left  

    I would say the private sector hospital also seemed awfully keen to get rid of her. At her last stay after an emergency admission they even discharged her after 2 days when she improved despite it being within 24 hours of her having morphine injections for pain which seemed a bit keen to me.

    In the private sector you definately got more time with consultants during consultations and we built up a really good relationship with ours and discussed the pros and cons of treatment options before deciding, we also got access to drugs like Avastin which wasn't possible (or waould have been difficult) in the NHS.

    But we definately didn't get the sort of multi-group support as you describe privately - it was only when she started to have difficulties and we were back in the NHS that people like the occupational therapists and the like got back involved and we did rather lose touch with the McMillan nurses when we left the NHS that had been helping in the NHS Hospital when she was first diagnosed and who had been brilliant

    So I think it's a bit of a mixed bag - if you're not that critical then the comfort of a private room and the like is something that is important to a lot of people but I think we got a lot more support from different groups in the NHS.

     

    Of course it probably varies with region for what it's worth we were Milton Keynes / Northampton

     

  • Offline in reply to Pauline4

    Hi Pauline

    Hope you are getting along OK. "What if" certainly runs around in my head" however there is no mileage in burning up energy thinking like that. So like all of us here we just have to get on with it and make the best of our current situation.

    I live in an holiday destination area where the hospital has to deal with double the population for around 14 weeks in the summer and 50% extra for another 8 weeks. Added to this it is a popular retirement area with a far higher than normal percentage of over 65s putting further pressure on the NHS. The Hospital is overwhelmed and underfunded for the number of visitors and extra pensioners it has to serve. As the funding formula doesnt quite cover those extra people. I imagine that throughout the country there are different reasons why hospitals are under great pressure. I think it is the unwillingness of those in government, for political reasons, to levy a few pence tax on VAT or earnings to provide enough resources for hospitals to function properly. It is not until we enter hospital for treatment that we realise that NHS funding is a matter of your life or death.

    I hope you are able to get the care and support you need at your new hospital. Kim

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