Our CEO Victoria has been asked to give a talk to a large group of clinicians. One of the questions she's been asked to prepare is: 'How can healthcare professionals help patients and their carers more?'
Obviously you are all the experts on this so it would be great if you could let us know your thoughts in the comments below. Victoria may quote you directly from the forum - there would be no personal identifying details but do let us know if you're not happy to be quoted.
Many thanks in advance for your help.
Best wishes
Anna
Ovacome Support Service Manager
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I would like you to ask clinical oncologists not to make assumptions about patients as to how we will react and how much information we need.
Fewer consultants talk down to patients these days but it does still happen. I have been ‘talked at’ and had my input ignored (even though I was eventually proved right). I ask you to ask clinicians to have a conversation with patients and ask us how much we understand about what is going on with our bodies. They should ask us how much we want to know; and if we want to see the scan report and blood results then let us have them without having to fill out a form and apply through official channels.
Hi Anna One of the things is if clinicians listen to the patients and carers and be guided but what they say. In my case I have never wanted to know the ins and outs of my disease. For me it was 'enough' to know I have Cancer. I'm not daft and I don't have my head in the sand but I do want to deal with my diagnosis MY way. Not everyone wants to be told the ins and out, whilst some people want every minute detail. I always say I have Cancer, I don't need to know the ins and outs just tell me what I have to do to fight it - that's my coping mechanism and it's served me well for just under 12 years even though my prognosis was for 2 years. I am stage 3 OC High Grade - told to me by my Occupational Health Dr from Harley Street who had been told by my Onc and GP not to give me this information. I don't know, daft probably but seeing it in black and white made it more real - I know, I don't understand that thinking either lol! I swapped Oncologist too because the first once treated me like a number.... my second one greeted me like she was interested in me, me the person, not just another statistic. I have another Oncologist now because I am under a trial at a different hospital and here I am also treated like a person. I think that's probably all I have to say! I hope that's of help. xx Kathy xx I can be quoted if any of this is of interest xx
I would like to have easier access to my test results.
I agree with the other ladies who have said they need to treat us as an individual and respect our view on the amount of information we want to know. I am someone who wants to know all the facts and details of scan results etc . However they also need to be aware of the physiological affect of their words and the language used. We are not statistics, our journeys are individual and they do not have crystal balls. It’s important that we are left with some hope especially prior to starting our treatment when we need all our strength.
I know that appointments can be rushed and they are under resourced but it is important that we have time to absorb what we have been told and time to come back and ask questions. We ended up paying for a private appointment to speak to someone who had time to talk through and explain the surgery and my diagnosis as my NHS appt was so rushed.
I was told when I first met a member of my oncology team that despite all the chemo and extensive surgery ‘ it WILL come back ‘ To be honest I nearly walked out and told them not to bother.
They could have said , unfortunately it may return or there’s a high chance of it returning. Or even a positive spin - there’s a ? % of not recurring.
By using the words it WILL come back they left me with no hope! Something that has been hard to live with despite me coping well with all the treatment and now being NED for 2 and a half years. I have since met a well respected Proff who told me they were wrong to tell me it would come back as they have no way of knowing.
Also to please be aware of the psychological affects when you are expecting a scan that is cancelled or results are delayed.
Good point Kim, the words I heard and now can't 'unhear' were similar ' It will come back and it will shorten your life' was what I was told. I do feel like I am now living with a ticking timebomb. xx Kathy
I agree. I was told straight after surgery when I was delighted that they had removed everything that I should understand that it would still come back. I was so upset and in so much pain.
I'm with Kim on the "leave the patient with hope".
I've had two friends die from cancer this past three months and both knew there was no further treatment options and initiated the conversation with their consultants. A wise and caring consultant can pick up these threads and sustain the kindness and care for their patient and their family/carer/friend by the support they give, practically in clinical terms and with words and tone of voice.
I'd add, nourishing joy, warmth and if appropriate humour, by any of the staff, the consultant, CNS, GP, and others is something the family members of my two friends commented on when life had passed away. This helped them be reminded of good happenings in their lives and acknowledge their appreciation.
Warm wishes to all, Lesley
Hi, can I ask are they involving patients in this process? It seems odd to involve a middle man/woman so to speak. Or has your CEO a diagnosis?
Our CEO was invited to talk from a charity perspective about UK ovarian cancer services, but this question was part of what she was asked to consider, so that's the section she's asked for forum feedback on because she doesn't have a diagnosis herself.
If you'd like to know more about the clinician education we do with our volunteers who have a diagnosis, you can read about it here: ovacome.org.uk/survivors-te... Although it mainly mentions medical/clinical students, the volunteers also present to staff as part of ongoing training after qualifying.
Please do let me know if you have any other queries.
I would echo and emphasise the importance of clinicians treating patients as individuals and also listening to them with open ness and respect. We appreciate they have to work to NHS guidelines and protocols but need them to advocate for us when we are vulnerable and feeling daunted by everything.
Also I think it is important that patients have consistency of care. I already know that at my next check up I will be seeing a different registrar to the one I saw three months ago but I’m hoping this one will have read my notes !
I agree with all the comments above and add that it is very important that clinicians listen to the patient, who is explaining severe side effects of medication and acts accordingly. Sometimes side effects can be ignored resulting in devastating consequences for the patient e.g. TIA, stroke etc which could have been prevented if patient symptoms had been analysed in a timely manner and not passed off lightly as being normal while going through treatment.
I’m just catching up but your point about side effects hit a note with me, Goldilocks. My first oncologist simply did not want to hear anything about side effects as though it wasn’t within his remit, so who else should we ask? I ended up going to a rheumatologist privately to get my joint pain sorted, that reflects badly on the NHS.
I hope it’s not too late Anna, but please ask clinicians to take side effects seriously.
I agree with Irisisme about side effects not being taken seriously. This definitely needs to change and I feel this could prevent serious consequences for lots of people.
I can't add much more but to be open minded about how other aspects affect outcomes like;
a) the way the diagnosis is delivered ( mine was like a brick and being told to read books on cancer and have a piece of cake in the canteen made me want to be violent),
b) the link between mind and body in terms of psychosocial stress and cancer - alleviating stress is important,
c) the connection between what we eat and having cancer seems more likely now
d) repurposed drugs, no skin off anyone's nose if we could trial these ( like low dose aspirin, metformin , or alternatives, some supplements or foods like green tea and earl grey (bergamot) which all have research papers but which the NHS do not yet subscribe to.
e) And finally, a No Deal Brexit needs to be resisted as much as possible as otherwise we won't be able to have new drugs or be part of international trials as we are no longer part of the regulatory environment. All people need to be involved including clinicians.
I would like clinicians to be able to say ‘I don’t know’ when they are struggling to interpret scan results etc and to actually do the periodic wellbeing assessments they are supposed to do but somehow never get round to!
Ditto what others have said about listening to patients! x
Yes, Lyndy, Good points all - especially the ‘wellbeing assessment’, I doubt some have ever heard of it!
Iris x
Thanks Anna that’s good to know, I’m always interested to know how we are represented on charity boards and within the insight gathered by others in relation to our support and care.
Cancer charities fall behind many others by not including a representative to their board who has or has had a diagnosis. Although bowel cancer uk has appointed Deborah James which is a move in the right direction.
Thanks for the prompt reply and thanks for the great forum support.
I personally feel that there is still limited understanding across the board for the complex nature of issues women have to deal with, you are admitted with a bowel blockage you see a general surgical consultant who has limited knowledge of cancer and focuses on the problem at hand. My experience is there is little joined up thinking or conversation between the different clinicians we see. Also services vary too differently dependent on which part of the county you are in.
Thank you for your comment. As our founder had ovarian cancer its always been really important to Ovacome that we include those affected by ovarian cancer at Board level. Currently our Board is made up of three trustees who are living with ovarian cancer; two who are family members of women who had ovarian cancer; and two who work clinically in gynae-oncology. Do let me know if you want any further information on this.
With respect, living with a family member or being a clinician working with does not replace the experience of having it and i’m actually quite shocked you would feel that it does.
This is of course my opinion, which you are perfectly entitled to agree or disagree with. However until you have lived with (had) cancer you actually have no clue, my mother had breast cancer and although I believed I went through that with her I didn’t realise until I had a diagnosis just what that entails.
I'm very sorry, I think my answer wasn't clear. Three of our Board members are women who have a diagnosis of ovarian cancer. Then I just wanted to let you know the rest of the Board and their experience. We would always have women who have had a diagnosis of ovarian cancer involved in the charity.
I'm sorry again for not being clear and the upset caused. Do get in touch if you want to discuss this further.
PS it would be helpful to have more interest and knowledge about low grade serous carcinoma too as it is simply treated the same way as high grade but is resistant to chemo and behaves very differently. It would be great if clinicians would take on board any research or information we get from experts like Dr Gershenson in MDAnderson who is the world leader in this . If our oncologists were more proactive in trying to get latest information or hearing what we have discovered it could be more hopeful for us.
I agree with most of what has been especially about the unnecessary repetition of negative messages. I am 5 years post diagnosis and worked as health professional for 30 years but for some reason it is necessary at every opportunity to spell out again that my treatment is only ever palliative and the cancer will never go away. A favourite time for this repetition is if I appear too happy or upbeat.
I would also like to make a practical plea. It would be great if health professionals had some concept of how much time a person with cancer spends hanging around at hospitals just “waiting.”
You wait for your blood test, you wait to see the Oncologist, then for your scan, then for chemo, then for your meds, waiting often for hours on end in hospital waiting rooms. Exhaustion, stress, fatigue, frustration result. I personally have waited up to 7 hours sitting in a waiting room to start a chemo infusion. This is not healthy physically or mentally and I don’t think it is how anyone would want to spend their limited time.
However for some unknown reason staff seem to think if you have cancer your time is not as valuable. There is an expectation that you will be happy to wait. Often for the convenience of the service rather than the cancer patient.
I have heard all the trite excuses but if the will was there things could be improved. For example suggest a patient phones the chemo ward to check their drugs have arrived from pharmacy before they travel to the hospital or arrange for a scan patient to collect their contrast solution rather than having to hang around the hospital for 2 hours just to drink a couple of jugs of fluid.
Some awareness of the practicalities of living with cancer, the desire to put the needs of the patient first and the application of a little common sense could make a huge difference.
Juliax
Dear Anna,
This is a tough question to answer because of the complexity of the situation. As a patient, I feel I have been treated with professionalism, humanity and given hope wherever possible. I feel my part in the process is to understand the enormous pressures under which the medical teams are working. I believe they are all doing their utmost to help. Over the years with the support of a very calm husband, I have learned the benefits of firstly staying relaxed and calm, going with the flow so to speak, and secondly of preparing for consultations and procedures actively, making sure I get the best out of the event. As a couple we talk to each other about concerns which affect both of us too, as being the carer is not at all easy. At times, we agree it’s even harder for him as it’s impossible for him to know how I feel. There could be more recognition that his life has been compromised significantly too.
In a constructive sense, for the audience you will have, I would say that the least satisfactory part has been the lack of what we call joined up writing. Each specialist team works within their remit but the cross links only seem to happen at crisis points in an MDT meeting. Also, in the drive to sort out the major issues, the lesser side effect issues get lost. I’ve had to press really hard to get expert support with bowel issues, despite this area being one of the long term concerns all round. Bringing this issue further up the priority ladder earlier might give better quality of life, possibly extending life too.
So my request is for more cross discipline thinking in the good times as well as the bad, more focus on quality of life and actively aiding patients and careers to cope with the psychological pressures. Nevertheless, my message is also a big thank you for being there.
I was complaining about being extremely fatigued. Exhausted. A male Dr kept running urine tests. I was losing weight and my stomach was growing. An easy ultrasound or blood work would have shown elevated white blood cells. He didn't listen to me. He said I had pelvic inflammatory disease. I went to him 6 times with complaints. Then one day I collapsed, thank God a great ER Dr asked if I'd been diagnosed with anything. I told him pelvic inflammatory disease. He rolled his eyes and said cat scan, a 2 lb mass was removed 2 weeks later. Drs need to listen to patients. They kept saying I wasn't getting enough sleep. Luckily I have the best Dr ever now. I've been cancer free over 5 yrs. I don't know if this will help, but I'm sure had I not collapsed, I wouldn't be here. Hope this story helps. Liz
My experience is that there seems to be a problem generally with the oncologist training. At my hospital (Barts) I had to sign a form when I had my first chemo. There were two options and the first one was ticked. To cure you or something of that ilk. Now when I had my second chemo they ticked the second option, which was more in the line of palliative care.
That is absolutely wrong and no need for it. I also have multiple myeloma and I checked the form - there are no tick boxes and the hematologist only makes a comment.
Following on from that as I was only diagnosed last march, had my initial 6 months chemo, no surgery (long story) and then recurrence very quickly. So I am now on chemo number 4. Chemo number 2 was stopped and number 3, weekly taxol landed my in hospital because of extremely low red blood cells - I had 4 blood transfusions and a chest infection. I didn't want chemo no 3, I told them it wouldn't work, but they didn't listen.
After chemo one I was assisted by a registrar who doesn't seem to listen and apparently not always attends MDT meetings. So communication is ZERO.
I also wonder, given that I am a hopeless case, how much effort they put in. Now that is absolutely wrong and they should be told. Now it can be different although probably there are very few hospitals who put the patient first and try everything to get the cancer under control. So after a long battle -now I am at Queen Charlotte and it is making the world of difference. Chemo no 4 in pill form and daily.
It should be stressed as well, that the little things that oncologist do or don't do affect our state of mind. Now that is certainly not good if you have to battle such a horrible illness like cancer of the ovaries. I thought it wouldn't affect me, but it has and being now at Queen Charlotte I am noticing the difference.
And it can be difference because for my multiple myeloma for which I go to Barts the team is brilliant - I had many chemos until landing on the best for me. So it can work.
So please stress the fact that with cuts etc it is not only the standard treatments they have to focus on They should never forget the patient. They are all different and need care with selecting the best treatment for them.
Yes I also remember that awful form. The oncologist crossing out the option of chemo to cure cancer with a thick black line as if she was writing me off there and then! Such a brutal form, is it really necessary ?
I was told at diagnosis that anything I needed to know about or who I should inform of any symptoms would be my CNS. She would be at the end of the phone. She was with another patient that day, but I was given a card with her number.
This was in March 2017. By the end of the year, chemo, op, chemo and another op I had had five CNS and then no one as my new CNS wouldn't be starting work for three months. She did start at the beginning of the year, but was soon off sick for 2 or 3 months. Not the nurse's fault that she was ill, but every time I needed answers there was no one there to answer my queries. Things have got better, but it can take up to four/five days to get a ring back from her answer phone.
I was given the impression at the start that I would have the same CNS throughout my journey and that she would be there for me, but in the end it was no comfort at all as I kept seeing new nurses every time I had an appointment, or no nurse at all.
Perhaps not promising things that can't be guaranteed would be best.
Many valid points have come out of your request for feedback. I can see certain themes running through those threads. My experiences have been pretty positive. In fact the gynae surgeon who broke the bad news, spent over an hour in a busy clinic with me to answer all my questions, additionally he also respected my husbands part in all this.
My big gripe is paperwork. Gynae have sent copies of everything to me. Even after asking it is difficult/impossible to get oncology reports & ct results. Some hospitals appear to do this as routine for all cancer patients. Is this a cost issue? I appreciate posting is expensive, perhaps we could be emailed or given these reports at appointments. Luckily my gp prints them off when l ask.
Offer a test for BRCA mutation at the time of diagnosis, if there is family history (which there was with me). I believe this is supposed to happen. I was diagnosed Nov 2018. At the same time, my sister began getting pains high in her stomach. It was only after reading about BRCA on the internet that I asked for a test in May this year. I have just received the result - BRCA2. And after months of not being taken seriously, my sister has just received a diagnosis of terminal pancreatic cancer. Having that test last year could have changed the outcome for her.
Thank you for your comment. I am so very sorry to hear about your sister. Pancreatic Cancer UK have a range of support services which she may find helpful, details are here: pancreaticcancer.org.uk/inf...
Our sister charity Ovarian Cancer Action has a lot of information about BRCA on their website which you might want to look at: ovarian.org.uk/ovarian-canc...
I hope this is useful. Please do get in touch with me if there is anything we can help with.
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