As always after a conference, the following few weeks are busy. People getting in touch who have found my work for the first time, and others looking to arrange more talks. These days it is not only what happens behind the scenes but also the contact through all of my social media channels. My website gets more readers, and people want to contact me through Twitter and Facebook too. For large presentations I estimate one month of work. Two weeks to prepare and present, then two weeks to deal with the work afterwards. I am not complaining at all, and am only too happy that people want to learn from my story.
This week I am going to throw open the question of inclusion and diversity within cancer support. It is a subject I thought little about during my working life, but have encountered so much since I entered the cancer world. Having travelled the world whilst working for myself I met many people from different countries, and having lived and worked in London for my entire life am used to a very diverse community in every aspect. I am a ‘live and let live’ man and was never really interested in race, religion or sexuality, I only ever see a person, not defined by any of those or other factors.
Since I have cancer I have had to register my ‘disability’ to ensure that I am not discriminated against! Now there’s an irony, surely I am being discriminated by having to register that I have cancer? I then started volunteering with charities and the N.H.S. and started to hear more equality and diversity talked about. This interested me because I had never been in an environment where these things were even mentioned, let alone had whole departments to look into these matters. So what is the definition of diversity? Below is the best one I could find.
‘The concept of diversity encompasses acceptance and respect. It means understanding that each individual is unique, and recognizing our individual differences. These can be along the dimensions of race, ethnicity, gender, sexual orientation, socio-economic status, age, physical abilities, religious beliefs, political beliefs, or other ideologies. It is the exploration of these differences in a safe, positive, and nurturing environment. It is about understanding each other and moving beyond simple tolerance to embracing and celebrating the rich dimensions of diversity contained within each individual.’
Naturally we are all unique as people, and everyone who is involved with cancer has their own story, but I would like to concentrate on the thing that we all have in common and that is cancer. As I get more involved in cancer support I see more and more people talking about different groups that need help in different ways. Young people, old people, Afro- Caribbean people, Asian women, Asian men, gays, lesbians, people who are transgender, and so the list goes on. Of course, these people all have things that are unique to them, but ultimately we all have!
I would like to open this up for discussion, as my own view is that although groups like this may be helpful in the short term, I’m not convinced of the sustainability for society, or long term gain for a majority of people. Should we not be concentrating on the things we have in common, and not the things which are different? In the larger picture we talk about Government not truly reflecting the people, in terms of race and sex etc, but how will that happen if even when we are sick, we are encouraged to stay within our own groups?
Of course when you are ill, you are at your most vulnerable and being comfortable in your support environment is key, so I do understand why these groups exist, but I have spoken at many different groups across many origins and they all laugh when I say I am still looking for a white English support group. It sounded crazy to them, but I then asked if for example, the Afro Carribean men’s group would accept me, and again they all laughed, but understood the point I was making.
With financial resource at a premium, I have to question why we might want several different groups all discussing cancer, within a few miles of each other. Would it not be better if we were all sitting round the same table learning from each other? I totally understand the cultural differences, and I guess if that encourages people to receive support where they may not have done, then it is a good thing. I also understand the different requirements that old and young people have, and the improvement in age appropriate care is fantastic. But surely there is a limit to how many sub groups we can create to cater for the needs of our ever dividing society.
Of course certain cancers are specific to either male or female, and some more common with different ethnic backgrounds, so there will already be an element of division here. I have worked for six years in cancer support and the groups I attend have never ever reflected the local population in terms of diversity, and I have asked lots of people why? My conclusion is that many people are just not interested in being proactive in their care, and not because facilities are not appropriate for them as individuals. This is not a criticism more an observation.
I see more grants given to new groups appearing frequently, and of course I’m sure some are successful, but I look at the bigger picture of cancer support, with limited facilities and funding? A lot of what is happening now is headline making but not sustainable. New schemes are opening but old ones closing too. With the progress of social media, things must of course move with the times, but I feel now is the time to encourage people to support each other, and not work harder to separate us. Only by working together can we improve the cancer world as it is the one thing we do have in common.
The above are my opinions formed from years of multi cultural living and working, and numerous years in cancer support. I am aware that everyone has their own views on this subject and please feel free to share yours.
Great blog again Chris, and quite ironic that myself and my husband had been talking about this very subject just before I logged on and read your blog.
I have always tried to make Womb Cancer Support UK as inclusive as possible and believe strongly in it being available to women from all walks of life. Now I know that the very fact of its existence goes somewhat against what you are talking about but the fact that there was a need to set up a specific organisation for women with womb cancer shows that they were not being supported by mainstream support organisations.
I do think that the internet has made it easier for people with similar experiences to come together and find support and in the absence of “real world” support groups, especially for those who live in rural or isolated areas, this can often be a lifeline.
When it comes to the funding issue; too many groups all looking for a share of limited funds means that some inevitably miss out and its often the bigger organisations that get the cash.
I really don’t know what the answer is but whilst people with rarer cancers or people from minority groups feel that they are not getting the support they need from bigger cancer organisations then there will continue to be more and more cancer specific groups set up.
Hi Kaz Thanks for your comments and I’m glad you enjoyed the piece. Actually in the instance of Womb Cancer Support, there is no duplication at all, and I agree entirely that if there was adequate support out there, you wouldn’t need to do what you are.
I think the point you make about funding is a key one. As we both know the area of cancer support is vast and we will never reach a position where everyone receives the support they require. My concern is that in the current system there are many groups doing similar work, divided by ethnicity, gender, and sexual preferences to name a few. my feeling is that more effort should be made to help people integrate better with each other, and use the money more effectively.
Social media is certainly a fabulous tool for us to form ‘unnoficial groups,’ at little cost, but as you mention, we are doing that ourselves.
Maybe we need to look a lot closer at what we think ‘support’ looks like, because it is very different now to ten years ago. Survivorship is more the thing now. But however we go forward I feel we must all work in a more together way and not be as divided as we seem to be.
Thanks so much for sharing your experience, Chris x
Dear Chris, Your words as always are so very true, I have had the same thought as yours for many years and have been almost shouted down when speaking about the same ideas. I myself think there is too many organisations speaking on the same topic but when suggested they work together their eyes go up to the sky. As usual I thank you for your thoughts. Also for the help in putting me in touch with other people. Will let you know how we get on. As always best wishes to you and your family Georgine. x
Thanks so much Georgine. There were times when I thought it was only me thinking like this, but I see it week after week now so had to open it up for discussion!
The diversity in our society gives us a rich choice of experience to share and we should all benefit from that. A cancer experience is something that we will all face, either directly or indirectly, and we can all learn from each other.
Resources are very tough in the support sector and I just feel that there is too much work which is duplicated, either by large health organisations or smaller support groups.
My feeling is that we need to concentrate on the things we have in common, and not our differences.
You are welcome for the contact and I hope that things work out! Thanks as always for your support, Chris
Good morning Chris,
I could not agree more. You have handled this delicate subject with great sense, compassion and integrity. I could not agree more about the need to break down barriers and discrimination and work together, unified for a common goal.
-We need less segregation not more!
This is a very important issue that we should not shy away from but address. I congratulate you and encourage you to take this subject forward.
I hope that you have a good week Chris and thank you for a well written article. Good luck with your work and keep well.
Thanks so much for your comments. This is a subject I have been thinking about for some time, and having seen yet more work being duplicated, I felt the time was right to pen this piece.
As you know I like to open up a healthy debate, as this is only my opinion, and I was prepared for many people to disagree with my views. However I have only received comments from people who are agreeing also, but it is early!
I am talking actively about these issues, and people always smile, but I think they understand what I am saying. My feeling is that as a society we have become bogged down in equality and diversity and these are boxes that need to be ticked, and organisations are applauded for that approach.
Where there is a problem with limited funding I believe a more common sense approach should be taken, and we should be enriched by other peoples experiences.
Thanks as always Tricia and have a great week, Chris
As thought provoking as ever Chris. I share your views though, working and supporting together in all our diversities. I attend a brain tumour group with a benign tumour whereas a lot attending have malignant tumours, in that we are different but we also share so many problems and emotions we get so much from each other’s experiences x
That is exactly what I am talking about Dawn. I have seen so many things recently, that makes me feel we are becoming more divided, by seeking an individual ‘design to fit’ support. I do understand that this will not suit everyone, but no system can. How can we learn if we don’t work together? x
I agree Chris it seems we become more divided with certain things in life, perhaps people feel they would lose their individuality by joining and supporting others, still, unfortunately think, we are a long way off before humans actually see other human, religion, culture etc will remain x
Thanks Nikki, and I agree totally with your comments. I have always felt that way with society as a whole, but in cancer support the resources are so limited. Many people feel that it is their right to have something tailor made for them. Of course we are all different, which makes the world such an interesting place, but we need to learn that there are times when we all need to work together. By concentrating on our differences we are losing sight of what is important 🙂
Sometimes I feel that the cancer community is like a divided playground, one is right whilst the other is wrong and vice versa. There are various groups rustling their plumage, and they have forgotten what drove them in the beginning to be where they are in cancer support and refuse to unite their resources. Cancer is cancer, it hurts, it divides, it shows no mercy and it spreads fear. It makes no difference whether it’s in your breast, testicles or bowel the effects on both family and the observer is the same. That’s why knowledge and support is essential.
A lot of the issues and questions I’ve faced have fallen on the fact it was me and me alone receiving support, which to me sets me apart from my family and their needs which also needed addressing.
What makes the quest for support so difficult? Well what makes the cure of cancer so difficult? It’s what set us apart our evolutionary quest to remain unique, or selfish (harsh I know but it’s true). The quest for improving support will always have holes to be filled, because like a lot of things in life the goal posts keep moving due to the individuals needs altering. When we feel we have solved one area of cancer support, another issue pops up which means another charity is created.
And we cannot forget the government role in this equation. They will never address the issues of so many charities blasting out the same message, because they take their cut in tax from the jobs created from generous donations made by the public. As my daughter said it’s a win, win situation where the government are smiling and they need never dip in the public coffers to sort out what is an essential within the NHS and patient cancer care.
I couldn’t have put it much better myself Sarah, and you have made some really effective analogies. It’s a great point you make about the ever changing landscape of cancer support too!
Also our needs are changing, as it is a lot more about survivorship now, and trying to live a life with cancer and the side effects of treatment. The main point of course is very much still valid, and that is resource is so limited, therefore patients and health organisations need to be much better about working together. Thanks for sharing your views and experience.
[…] Chris asks the question do we need more inclusion and diversity within cancer support? […]
I agree there is a problem with duplication in cancer support and organization. Part of it may come from the fact that a lot of orgs are not collaborating. For me I feel that cancer support has nuance. I think that as a general community we have to start to build organizations that are inclusive but also have moments of specificity that meet the needs of a defined community. I think that collaboration is the way forward. Collaboration to stop duplication. Collaboration to really understand the fine lines between inclusion and specialization. I have metastatic breast cancer.
I am 36 years old.
I have joined general met. groups and found myself younger by sometimes 50 years. That is a big gap. We learn from each other but their lives are so different then mine. I’m in the middle of my career. My friends are not retired and my children are very young. I’m not trying to tie up life. I’m trying live all that I can in the moments I have. It’s hard to feel connected in a place of such extremely different world views. I talk… They feel deeply sorry for me and we move on.
General young adults with cancer also have very different needs then I do. The majority have ‘curable’ cancer and are working to get beyond their diagnosis. A lot of young adult cancer orgs and support are about that getting your feet back on the ground and moving on. Rarely is there space in the discussion for people like me who are living and dying at the same time. The feelings of isolation are huge from that lack of inclusivity.
I think that there is a fine line in all of this. General organizations need to reflect and acknowledge all populations. But there needs to specificity when there are variant needs. A space for people whose struggles don’t reflect and get lost in the voices of majority. Programming that is current and doesn’t segregate and isolate. Collaboration within the communication is important to stop duplicity. I guess all that to say it’s very complicated and with a lot of nuance. We need to bring community’s together as a whole in a way that the voices of the majorities don’t drown the voices or the minorities. And we need to also to give space for specific needs and communities that can’t be addressed I general programming.
Your post way very thought provoking.
So pleased you enjoyed the piece, and am grateful that you have taken the time to share your views and experience. Before I replied to your comments I took the time to read your own blog, which I also found thought provoking, and I can see that we have similar views in many areas. It is also interesting to me to see that the issues are similar in most places around the world.
Within my site I am always keen to feature guest blogs and have work from all ages. I am currently doing some work with an older age group, who’s problems are very different to yours and mine.
I guess the main issue is that everyone’s case is different and brings unique problems, so therefore there can be no real generic support via a ‘one size fits all’ group. This creates the duplication we experience, as groups start to sub divide.
As you rightly point out in your blog, isolation is a massive issue, and is the main reason that I started this site. What I try to do is provide a platform where we can all share our own experiences for the greater good. I know my readers enjoy learning from others, no matter what age or tumour type.
Cancer can be extremely divisive and I feel we need to work harder to work better together, and very definitely collaborate more! My best to you with thanks, Chris