Patient experience – what does it mean to you?

JenniferB- Macmillan

Macmillan campaigns

Keep up to date with Macmillan's campaigns, current issues, and how we’re working with government to improve outcomes for people affected by cancer.

Macmillan - Blog Entry Post

Patient experience – what does it mean to you?

Following the shocking failings at Mid Staffordshire NHS Trust, the Government has promised to put ‘the experience of patients at the centre of what the NHS does and the way in which its success is judged.’ But what does this really mean? And what do you think is a good patient experience?

At Macmillan, people with cancer often tell us how important it is to have a good experience during their treatment and care. Here are just a few examples of what patients have told us are part of a good experience:

  • the doctor asked them what they’d like to be called
  • they were given information about the potential side effects of their treatment
  • they were involved in decisions about their treatment and care
  • they knew who to ring when they needed support outside of hospital

They might seem like simple things, but we know that they can make a huge difference. Unfortunately, too many people with cancer are not getting the experience they should expect.

However there’s good news...

The Government has made patient experience 1 of its 5 priority areas for health and social care and has committed to putting the patient at the centre of everything it does. 

But how can we make this commitment a reality?

We know one way that’s already worked is to ask people with cancer how they rate their hospitals on various aspects of patient experience, and to publish the results.

At the moment, the experiences of people with cancer are measured using the Cancer Patient Experience Survey. We’ve published Hospital League Tables to show which hospitals are doing well in the survey and which need more work, and have supported hospitals to improve the care that they provide.

NHS England (a new body which oversees the running of the NHS in England) is now responsible for the Cancer Patient Experience Survey, and we’re asking them to commit to repeating it. Find out more about the survey, and why it’s so valuable for improving patient experience.

We’re also thinking about other ways that the Government, NHS England and other health and social care organisations can improve patient experience. As part of this, we want to know what a ‘good’ patient experience means to you:

  • What did/would really make a difference to you in terms of your experience during your treatment and care?
  • Are there any examples of a particularly good (like the examples listed above) or bad experience that you could share with us?

Please let us know what you think below, or by emailing us at campaigns@macmillan.org.uk.

We’ll keep you updated on the campaigns blog about how we’re getting on.

Macmillan - Blog Entry Feedback List
  • At the moment I wouldn't put my dog in the Hospital my Husband is in!!!!1st day post op anterial resection....they left him 14 hours sat in a chair.Falsified the notes ( which I looked at) and said he'd been in bed 2-4pm.....it was visiting time I was there! DOH!!!!!

    They never changed his stockings that day, washed him, soaked his feet or cleaned his teeth....ooo funny that they said they had in the notes!!!

    Now every visiting time his notes are not there!

    He vomitted badly during the night 2nd night.........rang the buzzer for 45 minutes until someone came.!

    Day 3....I went at visiting time to find him with his feet soaking...in clap cold water...so I took them out & dried them...then the Sister had the arsy- ness ( excuse the pun) to tell me off as it was their job & why hadn't he buzzed! erm thicko cos someone had moved the buzzer out of range & it didn't work during the night so why should he expect it to now!

     

    He had an epidural in for pain relief ( also GA) which didn't work.....they had been told to call the anaesthetist in during the night if he was in pain....they left him 18 hours before the consultant came & banged him straight on pcass morphine! Trust them ..not a hope in hell.....even a doctor has asked if I want to formally complain & believe me this whole farce started dec 19th when he was diagnosed......one day I will write a book!

     

    Even in their own literature it stated he should be given 3 protein drinks a day so at 2.45 when I asked why he'd only been given one the Sister looked quite daft at me and said oh why didn't you say!!!!!!! I would love one of their relatives to be in the bed instead maybe just maybe they may get a handle on the whole mess we used to have pride in calling the NHS!!

     

    Now he's been violently sick for 2 days...back on a drip & obviously its affecting his recovery! My god I could tell the government a thing or two about the NHS!!! We had always been lucky to have private medical cover however change of circumstances and it went with his job!!!!!

     


  • Hi Ebonybo,

    I’m really sorry to hear about your very difficult experience.

    We have some information on our website about making a complaint which you might find useful:

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Gettingtreatment/Makingacomplaint.aspx

    All the best,
    Anna


  • I hate to say this AnnaB but I have already had cause to complain to the Robert Ogden Centre In Leeds which I believe is linked to MacMillan....The Manager Sadie was in agreement with all my complaints & suggestions of improvements which should be made to their service....infact I have a letter of apology!

     

    I have no intention of becoming a serial complainer but my goodness I have had my eyes opened recently!


  • I hate to say this AnnaB but I have already had cause to complain to the Robert Ogden Centre In Leeds which I believe is linked to MacMillan....The Manager Sadie was in agreement with all my complaints & suggestions of improvements which should be made to their service....infact I have a letter of apology!

     

    I have no intention of becoming a serial complainer but my goodness I have had my eyes opened recently!


  • Hi Ebonybo,

    I'm really glad that the manager took your comments on board. However, we always encourage people to let us know if they have problems with Macmillan services, so that we can make improvements. You can do so using the online contact form:

    http://www.macmillan.org.uk/Aboutus/ContactUs/Online_feedback_form.aspx

    All the best,

    Anna


  • I have to say that my original experience was absolutely horrific.  I was initially referred to an NHS hospital near to where I lived and it was a huge, teaching hospital.  After weeks and weeks of tests they STILL hadn't manage to diagnose anything at all other than thinking perhaps I should be referred to someone else.  The hospital doctor told my GP to ensure he did weekly blood tests to check things weren't getting any worse, my GP failed to do this saying he didn't think it was necessary.  And so it went on.

    As I have private health insurance, I finally went to another area (London) and saw someone privately who diagnosed me within days, had me see a hematologist and an oncologist the same week and treatment began almost instantly.

     

    While at the hospital I met another patient from my original area who had had the same experience as me only HERS had gone on SEVEN months with no diagnosis.  In fact, she was told her tiredness, weight loss etc., was all in her mind and a result of a recent relationship break-up she'd had.  She did the same as me, took herself out of the NHS and went to London where she was diagnosed.

     

    It's beyond disgusting and the national cancer guidelines are a joke where I live.  Just ignored.  They seem to say so long as they haven't referred you - then the guidelines don't kick in - they only apply AFTER you've been referred as a possibly cancer patient.  It's an utter joke.  I truly fear what happens to patients who do not have the ability to switch hospitals.  And, as a side-note, this particular area has had LOADS of bad reports about it and, in particular, about missing diagnoses.  I'm still really angry about it so sorry if this sound overly cross.


  • Just a little addendum to that : my original NHS place DID have me down for various tests but the GP then decided not to refer me for them (despite the consutlant asking him to) as it was a waste of money and I "didn't need them".  Had they done those tests, according to my current hospital, they would have clearly shown what was going on.   It's a money thing often here - the hospital want the GP to refer you as then it comes from their budget not the hospitals (apparently - no idea how that works) and the GP's are incredibly reluctant to do so feeling the hospital should have done it.  One test he DID refer me for, he actually said to me (the GP) "Next time, make sure the hospital sort it out as I'm not doing it again on their behalf".   It really needs sorting out.  


  • Hi Clementi,

    I am sorry to read about your awful experience, but we really appreciate you taking the time to share it with us. It's always helpful for us to hear about examples of what needs to change. Part of our work will involve looking at issues such as payment in the health system and guidelines to make sure they reflect what is important to people who use the NHS.

    All the best,

    Anna


  • Hi folks got to add that my husband did end up staying 14 days in his hell hole instead of the 5 days he was originally looking at......so bad was he treatment & car that the CQC are now involved ...along with Social Serices ( for abuse) and when we were asked to attend a meeting with the Hospital matron & General Manager I took 1 & 1/2 hours to tell it how it is!!!!

    What pushed me to do this was they put the wrong drips in the wrong arms & blew the viens on his left arm ( which they need for chemo post op)...the poor 24 year old Staff Nurse & her 1 auxillary to 15 beds ended up sat on a chair crying her eyes out cradled in my arms!...for goodness sake ! NHS! I tremble to be involved & its about time the hierachy took more time to listen to the guinea pigs of these hell holes than to their overpaid Managers!


  • Hi folks got to add that my husband did end up staying 14 days in his hell hole instead of the 5 days he was originally looking at......so bad was he treatment & car that the CQC are now involved ...along with Social Serices ( for abuse) and when we were asked to attend a meeting with the Hospital matron & General Manager I took 1 & 1/2 hours to tell it how it is!!!!

    What pushed me to do this was they put the wrong drips in the wrong arms & blew the viens on his left arm ( which they need for chemo post op)...the poor 24 year old Staff Nurse & her 1 auxillary to 15 beds ended up sat on a chair crying her eyes out cradled in my arms!...for goodness sake ! NHS! I tremble to be involved & its about time the hierachy took more time to listen to the guinea pigs of these hell holes than to their overpaid Managers!


  • Today we’re launching a campaign to help save, of all things, a survey. It may not sound hugely

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