Fear; Part three ‘Ego, awareness and purpose'

 Living with cancer has made me more aware of every little blip in my health. I had an ache in my hips. It passed but I was wondering has the cancer spread to the bones? More scarily I had a marble size lump in my armpit that went away in three weeks, but had me thinking it was possibly in the lymph nodes. Fear.

Even as I wait in oncology it is interesting to see that the signs or other aspects of the visit that can increase my own fears. The radioactive sign on the door or an innocent poster about scalp cooling. Or the large crowded waiting area with quiet people; some not wanting to make eye contact. Fear.

In my last blog on ‘fear’ I had a short clip of Sophie Sabbage saying; “If you don’t take hold of your fear your fear will take hold of you.” She talks about people dying of fear and shock and the need "to pass through it (i).” Her books and workshops are a wonderful help and I again strongly recommend them. It is not about suppressing fear or losing all our fear - fear is a survival mechanism - the problem comes when it is part of our conditioning. 

At Sophie Sabbage workshop in London talking

fear

In the last two ‘fear' blogs I’ve talked a lot about how a culture of fear is being perpetuated. Even health service doesn’t always help. It seems to be less about keeping healthy and more about looking for illness to treat; this feels more fear-based and many of us can slip into what can feel like victim mode.

I recently caught Anita Moorjani being interviewed in a youtube talking about fear and what you can do (ii). It was a wonderful reminder that I still need to do work ahead of starting radiotherapy at the end of January. She is one of those inspiring people and I heartily recommend her first book, 'Dying to Be Me'. My partner came across it in the German clinic waiting room ahead of my transurethral hyperthermia treatment (iii). In that book, which we’ve since bought, Anita tells her story, how in 2006 she fell into a coma as her 4-year struggle with cancer was coming to an end. While doctors tried to attend to her body she entered into a near-death experience where she discovered one of life’s greatest truths: "Heaven is not a destination; it’s a state of being”. 

When she regained consciousness, her cancer was healed. In her book and the youtube she shares some of what we can do to work with our fear. For example it is easy to say 'don’t fear the fear', but so many of us fear say a treatment or strange symptoms, but know that our fears are only making it worse and that the added fear could lead to worse outcomes. 

Loving ourself

Loving ourself is key - accepting ourselves right now including any fear. It is more important than positive thoughts. But it is not always so easy. How can we best work on it and even love those fearful thoughts? Anita says that only in a place of acceptance can we change.

She goes on to suggest that the next step is to establish what we want instead; how can we create that reality? When we focus on our fear we focus on the opposite of what we want. We have to feel the fear, as that is the way we can come through it to a place of calm. And then, understanding that if I love myself, what do I want to be different? We need to focus on bringing what we want rather than focusing on disease. She argues this is not a war on cancer, it is not about irradicating sickness but promoting wellness. See my blog and short film here saying very similar about us not battling with cancer (iv).

Anita's new book, “What If This Is Heaven?”, looks at the cultural myths that impact on our daily lives. Myths like, “We get what we deserve” or “Coincidences are just coincidences”, are often accepted as truths without questioning. Anita’s experiences have allowed her to see heaven not as a physical place but as a state of mind, right here and right now. By freeing ourselves from these myths that are falsehoods "we can leave fear, heartache, and self-imposed boundaries behind and instead live lives full of purpose and joy”. I’ve already ordered a copy of this second book as this chimes so true with my own thoughts.

In her first book I remember reading one of the last chapters where she talks about how the external world mirrors what we feel about ourselves. And wow, is it difficult for many of us not to be disturbed by the world at the moment. I covered a bit of that in my blog and film with Heinz Bude (v), who I met in Bergen earlier this year - although since then things seem even more challenging!!

Anita Moorjani writes: “By letting go of any negative self-judgement, we allow our world to transform; and as it does so, we’ll be able to feel greater and greater trust. The more we are able to trust, the more we’re able to let go of trying to control the outcome.” This isn’t about negative thoughts attracting negativity into life; that isn’t necessarily true. It is more about emotions than thoughts. Similarly as I covered in the previous blog about fear, attracting positivity is not simply about being cheery and upbeat (vi). As Anita says 'being true to ourselves is more important than just trying to stay positive!’

But hey, where does that leave the world? I am still trying to get my head around all this!

More on loving ourselves

Loving ourselves makes sense but isn't always so easy in practice. I was interested to see that when we are young so many of us are taught not to be egotistical, not to have an exaggerated sense of self-importance. This can lead to us mistakenly suppressing our egos; that ’self’ that is distinct from the world and others selves. 

Yet to love yourself you must love your ego. We need the ego but also we need awareness or an awakening. Ego and awareness are different. Anita describes this in the youtube, how we must embrace our ego to know how to take care of ourself and awaken ourself to others. She says if our ego is poor but we are aware, then we can’t protect our self. For example as a 'people pleaser' we might do things out of fear of people not liking us. If we have the opposite, where our ego is high and we have no awareness then we are egotistical. If both are low then that leads to depression, addiction or escapism.

Sophie slide from Penny Brohn AGM 2019

So we need to love our ego and have awareness. Then when we are helping people we are doing it out of self love and the more that happens the more it will nourish us. This isn’t the blog to go into how we can do that - there are loads of books on it - but it must surely start with recognising where we are at (see slide left) and where appropriate learning to say no to the things that are not for you or when you are just doing it to make others happy.

Indeed the more you love yourself the more you will do the things to honour who you are. Loving yourself means uplifting yourself, keeping your energy high, doing things that make you happy and the more you do that your very presence uplifts other people. In contrast if we are always beating ourselves up for not being good enough or doing the right things, our energy is drained and quite often this then has a negative impact on other people’s energy. 

Finding our purpose

Many of us spend too much of our lifetimes being something we are not. Anita says don’t focus on loving yourself, don’t focus on getting rid of sickness instead focus on what you would do if you do love yourself. We all have a purpose and the way to find it, is to be ourselves: "to be who we are”. Indeed in all spiritual wisdom there is something along the lines of “know thyself”.

I’ve mentioned Kelly Turners’ excellent book, ‘Radical Remission’ (vii), well in that there are nine key factors that she has found that can unlock pathways to dramatic healing. Number nine in her book is ‘Having Strong Reasons For Living’. She notes, similar to what both Anita Moorjani and Sophie Sabbage say, that "allowing emotions to flow in, through, and out of us - as opposed to letting them get stuck in our minds and bodies - is vital for our health.” It is through enough desire for life, rather than complete fearlessness, that sees us through; a desire to live long but not avoid death at all costs. 

A key question Kelly Turner asks her patients is “Why do you want to stay alive?” Kelly Turners’ book has some great suggestions for action like writing down reasons to live, writing your ideal obituary, listing current reasons for living plus an exercise to find your calling.

Lots more I want to write but am grateful to be having another look at fear and what helps with it - no more time now - I don't think it will be the last visit to writing about this topic!

Notes

(i) https://myunexpectedguide.blogspot.com/2019/11/fear-part-two-what-can-climate-change.html

(ii) https://anitamoorjani.com/

https://wisdomfromnorth.com/anita-moorjani-dealing-with-fear-and-cultivating-self-love/
(iii) https://myunexpectedguide.blogspot.com/2019/06/transurethral-hyperthermia-my-experience.html
(iv) https://myunexpectedguide.blogspot.com/2019/01/dangers-of-single-story.html
(v) https://myunexpectedguide.blogspot.com/2019/03/fear-part-one-is-there-more-fear.html

(vi) https://myunexpectedguide.blogspot.com/2019/11/fear-part-two-what-can-climate-change.html
(vii) https://myunexpectedguide.blogspot.com/2019/05/best-three-books-when-you-are-first.html

Showering like James Bond

I have a daily hot shower and at the end switch it to cold just like James Bond in the Ian Fleming novels (i); interestingly my CVS card number was 007 when I started showering like this (it has since changed)! My Dad was Scottish and I remember him describing it as a “Scottish Shower”. Of course there is a long, long history of cold water being used for health; use by Greeks, Spartans, Finns, Native Americans, Russians and more are all well documented. 

 

It was the 1820s when the term ‘hydrotherapy’ got coined in Germany by farmer Vincenz Priessnitz. He claimed to cure pretty well everything including broken bones and erectile problems and saw hundreds flock to him including royalty. Popularity of hydrotherapy declined in the twentieth century but is seeing a bit of a renaissance. 

 

Getting ready for ice bath at Trew Fields

For me it all started at Trew Fields 2018.  I joined others for an ice bath organised by folks who work with ‘Iceman’ Wim Hof; you can see a short film here taken at Trew Fields (ii). I watched with some nervousness, even fear, as the pool was filled with bag after bag of ice. 

 

The session then started with us lying down on the ground and learning a breathing technique that involves thoroughly inhaling and exhaling. It has been described by Wim Hof as ‘controlled hyperventilation or power breathing’. You can see how that is done here (iii). 

 

Getting out of ice bath

One of the tough things for me, about an ice bath (or cold shower) is this Wim Hof breathing. In the ice bath I found myself initially almost hyperventilating from the shock and I was sure I wasn’t going to stay for two minutes. Strangely after thirty to forty seconds my body relaxed, my breathing became steady and I didn’t seem to feel the cold in the same way and when it came to get out I felt I could have stayed longer. Someone said, 'adapt to the cold don’t fight it'. That was good advice. The right mindset is crucial so that you can hear your inner voice but also know that the cold will not harm but can make things better.

 

Jo Lawrance cartoon

The sense of achievement was significant; as each group managed their two minutes in the ice there was clapping. It was some months later, after Trew Fields this year, that I caught a video of Wim Hof talking about his three-pronged approach; cold therapy, breathing and the commitment to stick with the approach. It was time for me to try regular cold showers. 

 

I was a little daunted. Some twenty-five years ago I tried two minute cold baths for over a month to help with my ME/CFS that at the time meant I wasn’t able to work. It was very hard to do and I didn’t see any tangible benefits, possibly my health was too poor at the time - warm showers seemed so much nicer! I have also done some occasional wild swimming and often end up in the sea even when it is not at all warm! My partner is Norwegian and readily gets into the sea at 13 degrees (and has cold showered daily for many, many years). I take so much longer to get into the water than her and also will more readily find excuses to avoid it - but can’t let down my Scottish ancestors by letting a Norwegian go swimming without me!

 

So why take cold showers?

 

Intuitively it feels right for me - but that doesn’t mean to say it was easy! I also take heart from reading the research on cold showers. The benefits listed - some with more research than others - include alertness, weight loss, better hair and skin, improved immunity and circulation, lower blood pressure, cleared blocked arteries, reduce muscle soreness after exercise, increased tolerance to stress and disease, relief of depression symptoms and even increased fertility (iv). 

 

In terms of cancer I’ve found no evidence of cold showers impacts but clearly boosting the body’s physical and mental health must be good. There was a paper that hypothesised that repeated cold stress could stimulate anti-tumor activity but studies are yet to see if this is so (v). Interestingly cooling caps are used with some cancers and some chemo drugs to reduce hair loss while cryotherapy (extreme cold), is used to freeze cancer cells in the prostate (vi); clearly both these are different to showers!

 

One additional benefit of cold showers that many bloggers and vloggers talk about is how showers can help set intention. In a clip of film on the Trew Fields Festival Facebook page, Stage4 survivor, Mairead McWellness, says it was key in helping her get back into a “I can do this” frame of mind (vii). 

 

In a similar vein, Joel Runyon at TEDxLUC, talks about how Cold Water Therapy can change your life and you can be more comfortable with the uncomfortable (viii). In the talk he says: "Every single time I find myself needing a little extra strength or a little extra courage to go to do something that is hard or difficult, or just a little bit uncomfortable, I take cold showers….If you’re not willing or able to be the type of person that is willing to be uncomfortable for five minutes alone in the shower, where the only negative outcome is you being cold for five minutes, and the only person affected by that decision is you, then how will you ever have the strength or the courage to choose to be uncomfortable in a situation, where the outcomes are so much greater, and the people affected by your decision far outnumber just yourself.”

 

One fascinating discovery coming out of Wim Hof's work is that he is now at a point where he, and others who have similarly trained using his full method, are able to voluntarily influence the Autonomic Nervous System. This has long been thought impossible and has now opened up new areas of research. You can see more in Wim Hof’s free e-book here (ix). 

 

Of course there are a host of conditions like pregnancy and heart problems that need to avoid cold showers or baths. There is also evidence that prolonged immersion can pose very serious risks to health. Advice on the web is that older people or those with poorer health should also consider whether cold showers are right for them and if going ahead to consider a gentler approach. It is vital folk check for themselves whether this approach is at all suitable. 

 

That moment you change temperature!

How to do it?

 

There are hundreds of suggestions on the web but, as Wim Hof says, you first need to commit. Find out more then commit to starting. Cold showers are awesome! Why would you not want to try?! You don’t need to commit for the rest of your life. I originally said I’d give it three weeks but four months on I am still doing it every day. See it as an experiment! Wim Hof has a downloadable sheet to tick off your showers - see here (x).

 

I started with hot showers like James Bond then finished with it on cold. This allowed me to start by turning it not quite to the coldest setting. In winter the water in our pipes seems too come up at  temperatures that feel like below freezing! I also started daily with 30 seconds of splashing cold water on myself but I was quickly able to get under the shower and extend it to over a minute or two. The initial shock has decreased somewhat but its still there! D*** that water can be so cold! In contrast I’ve read folk just do cold showers with no hot water first or start with only two showers a week; I guess we all need to decide what works best for ourselves. Certainly before turning the knob to cold I spend a long moment preparing myself; this helps make the shock easier to take.

 

Interestingly in one piece of research they found that cold showers led to fewer sick days; however it didn’t matter if the shower was thirty, sixty or ninety seconds (xi). However some of the other research says the showers have to be longer ie in the order of two or three minutes and Joel Runyon, mentioned above, talks about five minutes your body needs to adjust to the cold water and start stimulating all the positive health benefits that are known to be associated with cold showers. Wim Hof argues we all need to find what works for us but not more than five to ten minutes in a cold shower and never after we’ve eaten a meal. Amazingly Wim Hof has stayed immersed in an ice bath for 2 hours and managed that without freezing over nor sweating - but has been working on this for many years. I have a wee way to go!!

 

In terms of how cold? Again it is hard to find good info. One site says anything under 21C is considered cold yet that to me is warm!

 

Breathing? Wim Hofs particular breathing (iii) can be useful before the cold shower but it hasn’t fitted with my morning routine. The cold shower takes no extra time but I found the breathing needed me to create a space for that. I do the breathing routine a couple of times a week, but that needs to be a separate blog. Certainly after the first shock of cold shower, my breathing is now much more controlled and strangely I don’t feel cold when getting out - and often have a great sense of calm.

 

However while I’ve had calm after the cold showers, Wim Hof suggests some people will have wild dreams, feel unwell or seriously sad. He says this is part of the healing journey and if those experiences/feelings come we should go along with them. Also many of the cold showering 'fellowship' suggest we should have fun; I’m not one for singing in the shower but can imagine that might help initially with the cold? I’m not sure what other fun might be possible? Ideas welcomed!

 

Lastly I’ve read that the cold can be addictive. Some have suggested the cold shower might even be a ‘gateway drug’ to more ice baths and ice swimming! I’m not there yet but don’t have that resistance each morning that I had to a cold shower when I first started them. Enjoy!

 

Notes

(i) https://www.artofmanliness.com/articles/cold-shower-benefits/ and see my report and film on Trew Fields 2018: https://myunexpectedguide.blogspot.com/2018/08/a-cancer-festival.html

(ii) A short video story of Martin Petrus and Artur Paulins who taught an ice bath workshop at the Trew Fields Festival: https://youtu.be/HYOfQwEMAMs

(iii) https://www.wimhofmethod.com/breathing-exercises and animated video at: https://youtu.be/MaaB6ZlakgA

(iv) https://www.wimhofmethod.com/benefits-of-cold-showers and https://www.artofmanliness.com/articles/cold-shower-benefits/

(v) Possible stimulation of anti-tumor immunity using repeated cold stress: a hypothesis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2211456/ and scalp cooling: https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/hair-loss/scalp-cooling.html

(vi) https://prostatecanceruk.org/prostate-information/treatments/cryotherapy

(vii) Short film clip of stage4 survivor, Mairead McWellness (May only be available to members of Trew Fields Facebook page): https://www.facebook.com/trewfields1/videos/544240656402468/

And https://maireadmcwellness.com/

(viii) Joel Runyon at TEDxLUC: https://youtu.be/Gb0h8ZKvJW4

(ix) E-book: https://www.wimhofmethod.com/ebook-wim-hof-method-explained See more about Wim Hof and cold showers in this short film: https://youtu.be/aOBtVvdNdw0

(x) https://explore.wimhofmethod.com/coldshowerchallenge/

(xi) Cold showers can lead to fewer sick days: https://hbr.org/2018/03/cold-showers-lead-to-fewer-sick-days

Nell Gifford RIP

Gifford Circus blog - see here

Nell Gifford, the owner, visionary  and co-founder of the incredible Giffords Circus, died from cancer on Sunday (i). The Circus has been based in recent years just outside Stroud and many of us make an annual pilgrimage to experience a mega bit of magic, wonderful creative genius, Tweedy the Clown, live music, tradition, retro-chic, costumes, horses, jugglers, tumblers and so much more (ii). Circus as circus should be, leaving us exhausted, inspired and aching from laughing and clapping. It is an understatement to say Nell will be very missed but I can sense that she has created something in the Circus that will long outlast her. 

2008 and my first visit to Giffords

News of her death from cancer initially felt like a blow, as she is someone who has lived life so fully and passionately. If Nell can’t survive then what hope is there for others?! Yes, this is nonsense and plays into a whole host of myths about cancer. Like if you die, you haven’t battled hard enough; see my earlier blog here (plus a draft video with drawings from my cousin) about how that language of battle, which Nell also rejected, is so unhelpful.

Photo from 2008

In a short documentary film (see below), ‘Nell Gifford: Behind the Curtain’, by film maker Gem Hall earlier this year, Nell's life with the circus and her no-nonsense approach to cancer is captured on film; indeed elsewhere she has described cancer as ‘boring’. But she also says in the film; “You live life better and more meaningfully if you understand every day you are going to die.” She went on to say; "I actually believe that cancer can change your life so much for the better. I’ve found, I have been more ignited by life, more creative and have a way stronger sense of self.”

All this resonates with me, although my own situation is different and I’m not sure yet that I am at the point of being grateful for cancer. Nevertheless there is something very immediate when life is threatened that makes you look at the world differently; some things become less important while others more so. It reminds me of a powerful talk by Fi Munro at Trew Fields Festival this year (iii). See below my powerful 70 second clip of this talk, 'Live Like You Are Dying’; similar to what Nell was saying.

Fi, who has just published her story, ‘How Long Have I Got?’ also has a great quote on her website; "It is my firm belief that the majority of the perceived problems and worries that are going on in our heads day in and day out could be changed by embracing the simple motto of choosing to live like you are dying. After all, would you stay in the job you hate or the relationship that makes you miserable if you thought your life would end in the next year? Hell no! You’d be out doing things that make you happy and you certainly wouldn’t be worrying about what dress size you were either!”

Thank you Nell for the magic - and the reminder about how we can all live each day to the full.

Notes

(i) Nell's death was announced in her blog: https://www.giffordscircus.com/nells-blog/2019/12/9/nell-gifford-1973-2019

See also Guardian’s obituary" https://www.theguardian.com/stage/2019/dec/09/giffords-circus-owner-nell-gifford-dies-of-breast-cancer
(ii) Film about Giffords Circus: https://youtu.be/SBS0x9oTjxQ

(iii) More from Fi Munro at https://fkmunro.com/

Social Prescribing for people living with cancer?

Sir Sam Everington at Penny Brohn

At the Penny Brohn AGM last month we heard from the passionate, enthusiastic Sir Sam Everington, who has worked as a GP in Tower Hamlets since 1989 in the Bromley By Bow partnership. He spoke about the social prescribing delivered at the centre and how it is about more than medicine to meet the holistic needs of people. 

Social prescribing is a way for GPs, nurses and other primary care professionals to refer people to a range of local, non-clinical services. These can include volunteering, art, gardening, cookery, healthy eating advice, sports and more. There are different models for social prescribing, but most of them involve a link worker who works with people to access local sources of support. 

The Bromley by Bow Centre in London is one of the oldest and offers most patients several sessions to help them get involved in more than 30 local services ranging from swimming lessons to legal advice. It is also a beautiful community space; indeed Gloucestershire’s Barnwood Trust highlights it in a leaflet of good examples of welcoming community spaces.

Barnwood Trust leaflet

There is a useful report here that shows the wonderful impact the Bromley By Bow Centre has had on people (i). In their annual GP Practice survey an amazing 100% of respondents wished to see the social prescribing service continue. The Kings Fund note how hard it is to measure impact but there seems to be growing evidence that it can lead to a range of positive health and well-being outcomes (ii). In 2017 a report by the University of Westminster suggests that where a person has support through social prescribing, their GP consultations reduce by an average of 28% and A&E attendances by 24% (iii).

NHS England has described the approach as a key component of the NHS Long Term Plan and has committed to funding primary care to employ 1000 new social prescribing link workers by 2020/21 “with significantly more after that”. 

This approach is great as it recognises that our health is determined by a range of social, economic and environmental factors; you can see my previous blog here on how we so need that more holistic approach. I’ve seen a number of good social prescribing projects which really seek to address people’s needs in an holistic way. Health journalist Amanda Barrell (iv) writes: “...social prescribing has the potential to shift the dial. With a more holistic approach, it could take the NHS from a reactive health service to a proactive wellness  service, while reducing pressure on secondary care and general practice. But quite how it will fit in with the already fragmented health service and its various stakeholders is unclear. As with most paradigm shifting projects, social prescribing has some high logistical hurdles to clear before its benefits can be reaped."

Certainly at present services are patchy and approaches vary considerably in the network of some 2,000 or more projects across the country. Some focus on areas like arts and culture (v) or exercise, some are are much broader, some spend a lot of time matching people to their activity, others hand out phone numbers for people to follow up themselves. Some have focused on particular sections of the population or particular conditions. 

Bromley By Bow, is one example where they had a pilot service in partnership with Macmillan aimed at supporting people with cancer; that has ended but their legacy in terms of awareness raising and more lives on (vi). There are various other cancer-related schemes around the country that are also about exploring possible community-based services and activities that best fit and help patients get back to living their lives. Although there are questions about the value of putting people together with the same issue. In these examples it is clearly around the benefits of supporting and understanding each other through a similar journey - but isn't that just another way of creating a cancer support group?


Compassionate Frome

Another interesting project that has elements of Social Prescribing is The Compassionate Frome project, launched in 2013 with paid 'health connectors' to help people plan their care then with volluntary' community connectors' to help people find the support they need within the community. Basically the health centre, community hospital, social services, local charities and other groups have come together to map existing resources. Then brought together the volunteers to help set up groups requested by members of the community and the create one-to-one support relationships. 

Compassionate Frome are having some great outcomes and I know they are keen to share their model. However I also know that what works best is what is created by local people's passions, gifts and connections in the context of their own community; a model doesn't necessarily fit everywhere but of course learning from what others have done can be powerful stuff. See George Monbiot article on Compassionate Frome and communities here (xii) and a Resurgence article here (xiii).

In Stroud there is a group exploring the Frome model to see if something similar might work here. I attended one of the first meetings where over 30 people attended and there is now a group exploring a possible Stroud version. See SNJ article here (ix).

So some Social Prescribing schemes seem very positive but is there room for improvement? In the next bit I outline some of the issues that have been raised about Social Prescribing. As always I’d love to hear others views.

Anti-Social Prescribing!

In London last weekend, as my previous blog noted, I managed to visit the Wellcome Collection including Jo Spence’s ground-breaking photography that included her own cancer journey (vii). In one of the other exhibitions I joined a ’session’ on 'Anti-Social Prescribing’ which was part of a special 'Festival of Minds and Bodies’ (viii). 

Anti-Social Prescribing

 Dolly Sen, performer, poet and film-maker gave out an “anti-social prescription”; these included a walking group to nowhere and an anger mismanagement course. I got a prescription from her for mindfulness colouring-in, only to find we had swear words or politician’s faces to colour. Sen, who in the past has experienced her own mental health challenges, says she created these prescriptions as 'a response to the increasing trend of prescribing activities that emphasise an individual’s responsibility instead of dealing with the underlying issues causing them difficulties’. I found myself saying 'yes, yes, yes’ as we see this in so many aspects of life; too often the individual is seen as the problem and wider factors are not even looked at.

Obesity, for example, is framed as an individual or family problem that needs to be sorted with diets. Yet this ignores the fact that it is a product of social inequality and requires a collective social response. Research shows how poorer people are pushed towards unhealthy eating due to a host of factors like income, knowledge, preparation time and skills. A 2007 Government report outlined over 100 factors which contribute to an individual’s weight with genetics playing a key role (ix). 

Martin Cohen writing in The Independent (x) says: "The point is that we need to collectively tackle the places where obesity germs breed – in stressed communities characterised by insecure and erratic employment, inadequate education, stress, depression and a lack of social cohesion. That this requires an enormous shift in public priorities is only to be expected – but the consequences of not acting are far worse.”

Cancer can often be seen as similar; the focus on individual responsibilities rather than dealing with the causes of those difficulties. In terms of the above example of obesity, Cancer Research UK, launched a campaign last year about obesity causing cancer. Cancer Research UK said being obese or overweight is linked to 13 different types of cancer, but only 15% of people in the UK are aware of the connection. However many were critical of this. Comedian Sofie Hagen saw it as ‘fat shaming’ and her tweet led to many more criticisms of the campaign and a backlash against herself for raising the issue. In a similar vein the graffiti on one of their billboards (see photo) tryies to make the point that it is not that simple. Certainly there are some challenges with the ad as, not least, it frames obesity as a lifestyle choice and encourages weight stigma.

A top-down programme?

Cormac Russell, Managing Director of Nurture Development and a faculty member of the Asset-Based Community Development (ABCD) Institute at Northwestern University in Chicago talks about how some 40% of people visiting their surgery are lonely. There is also research showing that people can extend their life by up to four or five years if they are members of their local community groups and associations. So for many it is not necessarily medical attention that will be needed but community connection. Cormac, from whom I was fortunate to receive mentoring in the past, says; “Doctors hold keys to the medicine cabinet, but what they don’t hold is the keys to the community. So how can we support our GPs to figure out how they can refer people who need to build relationships in the community?”

In terms of social prescribing, Cormac acknowledges that the idea that a GP would not medicalise somebody is progress and that it is also better that GPs hand on folk to third sector organisations. However the challenge is now about how do we make sure that lonely, isolated people can themselves identify what they care enough about to get involved in. So instead of GP’s prescribing groups what we think are best for 'patients', we need to deeply listen to what those people care enough about to act on. Then support them to build relationships that are reciprocal not in groups where they sit passively in receipt of some activity. 

Of course schemes like Bromley By Bow already seem to be taking on that challenge with link workers helping people identify what they want to do. However I, like Cormac, have some difficulties with the term ‘social prescribing’. I don’t think it appropriately describes what is happening when someone is supported back to connecting with their community. Furthermore there seems to be an unhelpful power dynamic at play between medical services and patients. Health is maximised by empowering doctors and patients to develop `adult-adult’ rather than `adult-child’ relationships.

In Kelly Turner’s book ‘Radical Remission, Surviving Cancer Against All Odds’, she covers nine key areas that helped people with healing their cancers, one of those was how you 'take control of your health’. The current, all too prevalent view, in health services is that ‘patients’ who listen and follow instructions are good patients, others who challenge can get labelled ‘difficult’ or ‘annoying’. Yet the evidence Turner pulls together shows how important it is to take an active, rather than passive role in our health, be willing to make changes in our lives and deal with resistance or criticisms from others.

This highlights how crucial perceptions can be; some prescribing schemes may well locate the power more in the individual but I have heard of others where they are instructed that they do some certain activity. Indeed Turner suggests we should never be a ‘patient’ again but rather one who decides to take an active and engaged role in their life and health. Yes to that!

Danger of turning relationship building into a programme?

Lastly Social Prescribing is too often about referrals to community and voluntary sector activities, usually run by paid workers, so it rarely enables socially isolated individuals to participate and connect with their own neighbourhoods. This misses an opportunity to build more reciprocal relationships where each person is received and celebrated for their gifts. Indeed some Social Prescribing can be about referral and signposting with no emphasis on enabling communities.

So the question for me is more about how we can invest more in supporting local residents in building welcoming communities? We know this will also enhance health outcomes and reduce inequalities plus a host of other benefits like feeling safer. But then I could be considered bias as I have a part-time job working alongside Community Builders in Gloucestershire! It is also worth adding that some of the Social Prescribers I’ve met in the County are doing a great job and that it has been good to be working alongside them.

Cormac Russell (xi) puts it nicely when he writes: "Supporting people to create pathways towards a good life is not about prescriptions or referrals, it is about walking alongside people in their life’s journey. A doctor can’t do that alone, but they can advocate for greater participation and ensure that social issues are not medicalised, and community efforts are not devalued”. 

What do others think? What would be most useful for folk living with cancer in Gloucestershire?

More info

You can see Cormac Russell's thought-provoking ten minute video here plus his four part blog which includes a look at how social prescribing can be shifted into more effective practice in terms of connecting people into reciprocal community relationships and why a community building approach is part of the answer:

https://www.nurturedevelopment.org/blog/abcd-approach/social-prescribing-panacea-another-top-programme-part-1/

Glos Cancer Exercise

More about Dolly Sen at: https://dollysen.com/ and https://www.theguardian.com/artanddesign/2019/sep/06/being-human-wellcome-collection-london-art-and-disability-rights

Gloucestershire Cancer Exercise (not Social Prescribing and GP referral isn’t necessary): https://myunexpectedguide.blogspot.com/search/label/Exercise

Details of social prescribing services in Gloucestershire: https://www.gloucestershire.gov.uk/county-council-newsletters/suicide-prevention/february-2018/gloucestershire-community-wellbeing-service/

Notes

(i) https://www.bbbc.org.uk/wp-content/uploads/2018/08/Tower-Hamlets-Social-Prescribing-Report-Apr-Mar-2018-.pdf 

(ii) https://www.kingsfund.org.uk/publications/social-prescribing

(iii) https://westminsterresearch.westminster.ac.uk/item/q1455/a-review-of-the-evidence-assessing-impact-of-social-prescribing-on-healthcare-demand-and-cost-implications

(iv) https://pharmafield.co.uk/featured/social-prescribing-on-the-nhs-is-it-the-future/

(v) https://www.bbbc.org.uk/insights/learning-from-our-services/supporting-people-affected-by-cancer-in-their-community/

(vi) https://myunexpectedguide.blogspot.com/2018/08/a-mind-body-revolution-is-underway.html 

(v) https://www.culturehealthandwellbeing.org.uk/resources/social-prescribing

(vi) https://pharmafield.co.uk/featured/social-prescribing-on-the-nhs-is-it-the-future/

(vii) See my blog about the Jo Spence exhibition at the Wellcome Collection: https://myunexpectedguide.blogspot.com/2019/12/jo-spence-ground-breaking-photographer.html

(viii) 'Festival of Minds and Bodies’ was a series of exhibitions and events to challenge assumptions about what’s ‘normal’ and what we value. There were also some great events that I missed like a panel of disabled people talking about ’The Trouble with Charity’, another talk on 'The Politics of Deafness’, various dance and other performances including a woman roaming through the exhibition with her collecting tin for fictional charity Help the Normals. The exhibition was full of creativity and humour - not a surprise to me when I saw the exhibition was curated by Jess Thom and Matthew Pountney, co-founders of Touretteshero. I met Jess a long while back and was totally impressed by her then - particularly the way she talked about Tourettes in an accessible and fun way. You can see my film from when she spoke about Tourettes in Nailsworth in 2013: https://youtu.be/pmoIE1zzDFg

And a second film with Jess answering questions: https://youtu.be/kg1CFi6YfZ0

(ix) https://www.gov.uk/government/publications/reducing-obesity-future-choices

(x) https://www.independent.co.uk/life-style/health-and-families/poverty-individual-choice-driving-obesity-health-a8219831.html

(xi) https://www.nurturedevelopment.org/blog/abcd-approach/social-prescribing-panacea-another-top-programme-part-1/
(xii) https://www.theguardian.com/commentisfree/2018/feb/21/town-cure-illness-community-frome-somerset-isolation and more http://www.swscn.org.uk/wp/wp-content/uploads/2015/07/Community-development-in-Frome-the-GP-perspective-Dr-Helen-Kingston.pdf 
(xiii) https://www.resurgence.org/magazine/article5050-compassion-is-the-best-medicine.html 
(ix) https://www.stroudnewsandjournal.co.uk/news/communitynews/16306084.the-compassionate-stroud-project-stroud-4-mental-wealth/