Tuesday, 10 December 2019

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.

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

Thursday, 5 December 2019

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 sadly 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.

Compassionate Frome

Another interesting project that has elements of Social Prescribing (although I haven't seen that word used with them) 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 excellent 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:
Glos Cancer Exercise

(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

Sunday, 1 December 2019

Jo Spence; ground-breaking photographer captures her cancer journey

I was fortunate to be in London on Saturday partly to join the charity Yes to LIfe’s Strategy Meeting - some will remember that it was the first charity logo I added to this website (see my film and blog of ex-chair here). I’ve since then, supported them with some of these blogs but also helping set up a Wigwam Support Group in Stroud (see more here).
Part of Jo Spence exhibition

My positive impression of them has continued to grow as they are working in that space of integrative health care - taking the best of both conventional and complimentary approaches to cancer treatment. This is not without some huge challenges that I may cover in the future, but for now it feels so very, very important that there is a voice of reason out there. Perhaps more about all that in a future blog but for now I wanted to share an exhibition that I managed to catch.

Virtually next door to the Friends Meeting House, where Yes To Life were meeting, is the Wellcome Collection - now that’s a place that aims 'to challenge how we all think and feel about health’. They had a free exhibition with two artists, Jo Spence  (1934–92) and Oreet Ashery (b.1966), who explore the representation of chronic illness and 'how it can disrupt and shape the way we think about the body, family and identity.'

From Exhibition
Photographer Jo Spence documented her diagnosis of breast cancer and subsequent healthcare regime throughout the 1980s. The world was a very different place then with no internet to search for info and no massive alternative health movement. Yet in a series of documents, photos and writing, Spence documents how she rejected orthodox NHS medical treatment and explored Gerson therapy, acupuncture and Chinese herbal medicine. In one of her pieces (see photo left) she juxtapositions the choice or perhaps the lack of it, in the NHS, ie radiotherapy, chemotherapy and mastectomy, with the range of possible complementary options.

The Bristol Cancer Help Centre was set up in 1983 (now Penny Brohn UK) and gets a mention in her work - Spence went there and some of the newspaper clippings (see below) documented the struggles that nearly led to its complete closure - at that time the approach was thought by the established medical community 'to be on the very fringes of medicine'.  

Here is a quote from Spence describing the doctor telling her she will have surgery:
"One morning, whilst reading, I was confronted by the awesome reality of a young white-coated doctor, with student retinue, standing by my bedside. As he referred to his notes, without introduction, he bent over me and began to ink a cross onto the area of flesh above my left breast. As he did so a whole chaotic series of images flashed through my head. Rather like drowning. I heard this doctor, whom I had never met before, this potential daylight mugger, tell me that my left breast would have to be removed. Equally I heard myself answer, ‘No’. Incredulously; rebelliously; suddenly; angrily;  attackingly;  pathetically; alone; in total ignorance. I, who had spent three years (and more) immersed in a study of ideology and visual representation, now suddenly needed another type of knowledge; what has come to be called ‘really useful social knowledge’. Not only knowledge of how to rebel against this invader, but also of what to do beyond merely reacting negatively. I realized with horror that my body was not made of photographic paper, nor was it an image, or an idea, or a psychic structure... it was made of blood, bones and tissue. Some of them now appeared to be cancerous. And I didn’t even know where my liver was located.” 1982–86 The Picture of Health?
From Exhibition
Spence had no expectation that these complementary and alternative approaches to health would cure her but rather they would help manage the disease by supporting her overall mental and physical health. In the documenting her own treatment with photos expressing her physical and emotional state, she regained ownership of her body. Her doctor, Tim Sheard who also collaborated with her, said, ‘Spence is representing the honest emotions felt living in an unruly body that cannot conform to the pressures of female perfection expected and idealised in Western society.’

One of the descriptions of the exhibition calls on us "to challenge our understanding of ‘misbehaving’ or ‘untypical’ bodies, and reflect on how illness shapes identity”. While one of the photos is of herself, baring a scarred breast with her head wearing a motorbike helmet; the artist defiant in the face of death? The illness may have changed and disfigured her body, but it won't take hold of the whole of her.

Her work is not about victimhood or heroism. Sometimes it seems amateurish but I loved how she used photography to empower. Some of what we see in the exhibition is what she called, 'photo therapy’, where the subject was able to control their image to help uncover and even represent feelings or ideas that might be repressed or hidden in some way. By working with the person in front of the camera they could become both subject and author of the image. I also loved how she rejected much of the war-like language that is used around cancer - see my previous blog on that here - and also the photo of one of the quotes she had in the exhibition (see left).

Spence died from leukaemia in 1992, a decade after her original cancer diagnosis. She was not commercially successful during her lifetime, partly because she struggled with using other peoples’ images for personal gain. She worked as part-time as a secretary to pay her bills - today though her work is critically acclaimed and respected. Her work has also toured many community centres across the country; the original work laminated by Jo to protect them.

The exhibition is on until 26th January:


Don't miss these!! 

See also BBC TV's wonderful arts programme, Arena, about photographer Jo Spence and her journey with cancer: "It's also about the way she uses her camera, as a diary, a form of expression, an investigators tool, and most importantly a therapeutic process”: https://youtu.be/p-4s93Oj9mM

See also more about 'The Final Project’ about her reflections on her terminal cancer. See more including photos in this Guardian article: https://www.theguardian.com/artanddesign/gallery/2016/feb/16/photographer-jo-spence-the-final-project

And see Jo Spence Exhibition Guide from 2012: https://www.studiovoltaire.org/wp-content/uploads/2015/11/Jo-Spence-Exhibition-Guide-web.pdf

See also great photographer, Megan, I met recently - plus her short film: https://myunexpectedguide.blogspot.com/2018/11/meeting-megan.html

Nell Gifford RIP

Gifford Circus blog - see here Nell Gifford, the owner, visionary  and co-founder of the incredible Giffords Circus, died from cancer ...