Thank you. I am seeing a psychologist through maggies
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I was diagnosed in Jan 2024, I have not been asked even once how I am doing mentally or emotionally this year. It has been a tough year and I have had ups and downs. I have just dealt with it I think it would be nice and beneficial if a medical provider looked at me and asked me how I was doing and how they might help. All in all I am doing well thanks to my support at home
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Iām so sorry (and angry) to read that nobody has enquired as to your mental health but not surprised as it seems to be the norm in the vast majority of hospitals.
I am trying to find out who to approach to get support to raise this issue and get things changed.
I hope you are doing well at the moment. Xx
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Have you rang the BCN nurses 0808 800 6000 as they may be able to put you in touch with someone within Breast Cancer Now that may be able to help. Just thinking they may be already looking into this as part of breast cancer patient experiences.
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Iāve just had an email from them which answers an email that I sent them about this. Iāll try and copy and paste it onto here. X
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HELLO ALL
Just to update you. I emailed breast cancer now to ask if they could help with pointing me in the right direction re campaigning for better mental health support. This is their reply:
BCN REPLY:
Hi Judi,
Thank you for your email which has been passed on to the nurses.
We speak to many people who find coping emotionally after a diagnosis of breast cancer difficult. Mental health difficulties such as low mood or anxiety are common and being supported to manage these impacts is important, as you say.
At Breast Cancer Now we aim to help people live well with and beyond breast cancer and understanding mental health needs is a big part of this. Through our research projects we aim to look at wellbeing needs of those with breast cancer and how they can be better supported. We also have several Facebook and Instagram lives talking about topics such as the psychological impact of cancer and managing fear or recurrence. The aim of these session is to support anyone affected by breast cancer.
As you say, increasing awareness within hospital teams is also vitally important, and it may interest you to know that we have run several webinars for health professionals focused on supporting patients with their mental health needs. Health professionals are also encouraged to use tools, such as Holistic Needs Assessments (HNA) to help patients talk through their needs and concerns throughout their breast cancer treatment.
You ask about ways to share your views and highlight the importance of mental health support. Through Breast Cancer Now you may want to share your story or apply to become a breast cancer Voice to share your experiences. I can also pass your message to our policy team, who campaign for improvements in care for all people affected by breast cancer.
If you would like to feedback your experience with your hospital team you can do this through the PALS service.
Some health organisations have patient panels where you can share experiences and support changes to practice. Examples of these include the National Institute for Health and Care Research (NIHR), Macmillan Cancer Support and the National Institute for Health and Care Excellence (NICE).
You may also be find the Independent Cancer Patient Voices advocate group helpful.
Itās good to hear that you feel passionate to share the importance of mental health support for all people affected by breast cancer, it is also important that you are supported yourself as you go through your breast cancer treatment. We offer a range of free supportive services for anyone affected by breast cancer that may be helpful for you. It sounds as though you have spoken to your treatment team about your mental health needs, do continue to let them know how you are feeling. Many hospitals have psychological support tailored to people with cancer and your breast care nurse will be able to let you know about any support available locally. Alternatively, Macmillan Cancer Support offer 4 free counselling sessions.
Do call our helpline if you would like to talk this through or have any further questions. We often find we can help people more by speaking to them on the phone. The helpline team have time to listen, talk things through and signpost you to further support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000, (Relay UK -prefix 18001).
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
To view our opening hours over the Christmas period please look on our website.
Out of hours you can leave a message and we will call you back when we next open.
Thank you for contacting us. Please contact us again in the future if you have any further queries.
Kind regards
Cassie
Breast Care Nurse
Breast Cancer Now
6th Floor, The White Chapel Building,10 Whitechapel High Street, London, E1 8QS
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āSTART OF SUBMISSIONā
AON: 11924
Date submitted: 24/12/2024
Question:
Sent: 23 December 2024 15:38
To: hello@breastcancernow.org
Subject: Help needed
Hello
I am wondering if you could point me in the right direction as to which medical journal or medical association I should contact in order to raise awareness of the impact that a cancer diagnosis and treatment has on a personās mental health, the knock on effect of bad mental health on response to treatment and why we need better mental health support for all cancer patients.
I wish to bring this issue (not just in relation to breast cancer but all cancers) to the medical professionalsā attention, and also the public, as I feel that it is largely overlooked by cancer treatment teams.
I am currently undergoing breast cancer treatment and despite a documented history of anxiety and depression my treatment team have never asked how I am doing from a mental health perspective. I put a post on your forum asking what other people have experienced and sadly the overwhelming majority have had similar lack of consideration towards their mental health - many even flagging it up to their team but still not getting help.
None of us expect surgeons and oncologists to become counsellors and psychotherapists as part of their role. However they surely need to understand what their patients are going through and signpost them to where help is available. There is research that supports the fact that poor mental health has a negative impact on physical recovery and resilience to treatment. Also, people with poor mental health are more likely not to show for appointments or to give up treatment altogether - the effects of which cost the NHS more in the long term.
My breast oncology team have told me that they donāt ask how people are doing mentally and expect their patients to tell them if they are struggling. This in itself shows a lack of understanding of mental health in that some people need a bit of gentle coaxing/questioning to even say that they need mental health help - maybe because they attach a stigma to mental health problems, donāt want to be perceived to be āweakā in some way or simply donāt realise that what they are experiencing is a mental health issue (especially if hitherto they havenāt experienced mental health problems of any kind).
Given the shock of a cancer diagnosis and the often gruelling treatment I think that even the most stoic of people would be hard pressed not to suffer mentally at some point during their ācancer journeyā.
It is something that I feel very strongly about but I donāt know who I should contact to raise my concerns and try to effect a change.
Can you help? Can you direct me to the right organisation to contact or, better still, would you be interested in helping bring this important issue to the fore?
Many thanks
āEND OF SUBMISSIONā
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I had a look at their current research and found this, itās now closed for applications. It being done at Kingās College London.
The nurse mentioned the Holistic Needs Assessment, the breast care nurse gave me the form after my radiotherapy and I still had 8 months of Herceptin. She didnāt ask for it at the next visit but decided I was ok and didnāt need counselling. As said before I sourced some through my employer.
Hereās the link for BCN voices Breast Cancer Voices | Breast Cancer Now . Iām going to look into get involved with this.
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Thank you.
I filled in the holistic needs form (after having to ask for it) and I highlighted my anxiety and depression but nothing has ever been asked to me. I now make a point of mentioning that I have to manage my mental health in every email I sent. Actually my mental health is overall pretty good and I have a wonderful private counsellor but thatās not the point - if I werenāt ok how would they know if they donāt ask !
I bought this all up with one of the oncologists recently - and raised again the fact that poor mental health reduces resilience and ability to recover and makes people likely to not show up or give up treatment altogether. She said āI always say how are you when my patients come in the roomā. I resisted the temptation to laugh at her but very politely pointed out that most people hearing those words in entering a room will most likely consider it a pleasantry like āwhat a nice dayā or think itās referring to physical health. I explained why some people need a lot more than that to open up about what they are feeling. She kept trying to bat off what I was saying but I kept calm and carried on with what I had to say. In the end she did acknowledge that there what I was saying was valid. I am going to bring it up as much as possible.
Iām going to click on the links you sent me as like you I would like to get involved in trying to get our voices heard. It would be great if there was a celebrity that has had cancer and experienced its impact that we could get involved.
Hope you are doing well at the moment.
X
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Thank you. Are you in the UK or the USA as when I clicked on the link you sent the price came up in dollars?
I think most people going through breast cancer have moments of high anxiety and panic. Anything we can do to help ourselves is great. The issue I have raised here is about whether there is enough mental health awareness/consideration/support in the treatment we receive and the clinicians who treat us. Certainly it seems from the majority of replies that within the NHS this aspect of a cancer patientās journey is woefully overlooked.
Iām glad the publication helped you a lot. Iād be interested to know whether you feel/felt that your mental health was being monitored and cared about by your treatment team.
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I am afraid to tell that the treatment team referred me to a psychiatrist but in vain. So self help is the best IMO. I live in India but one of my friends suggested this book I read the kindle version. Was super helpful
I hope you are doing well.
Sending you a hug from the UK.
X