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Two reports from our 2020-22 research into what it means to be church on the margins in Greater Manchester

Click on the right to download each report.

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

A sermon for Church Action on Poverty Sunday

Download our local group’s report on the right.

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

A sermon for Church Action on Poverty Sunday

Jo Seddon at St Leonard's in Bootle

"What drives me is people and community. I am passionate about equality and want to see that here in Linacre ward."

Jo Seddon at St Leonard's in Bootle
Jo outside St Leonard's Youth and Community Centre in Bootle

All over the UK, tenacious and compassionate people are helping make change happen in their communities. This blog takes us to Bootle, near Liverpool, where there are big challenges but bright ideas.

Jo has a dream – but it’s not for herself. It’s for her community, the residents she sees every day, and for the children of the future.

Her dream is that local youngsters will dream big, and start to have bolder, brighter hopes.

A recent survey of local people here in Linacre Ward, Bootle, commissioned by local social landlords, found that young people’s ambitions were notably more local and pragmatic than elsewhere.

St Leonard's Youth and Community Centre in Bootle

An over-riding vision of hope

“It was quite clear that the aspirations here were about local issues and safety,” says Jo.

“It wasn’t about people wanting to be astronauts or to go traveling, like in other places. People’s aspirations were to have a warm house or a clean safe park. 

“The vision overriding all of this is hope. In ten years, I would like local kids to have very different answers when asked their aspirations for their life.” 

What happens at St Leonard's

Jo is helping to drive that transformation, by linking up with other like-minded hopers and changers. She joined a recent Speaking Truth To Power training session and is now working to build local people power in Bootle, towards a better future. 

Jo is a community development worker at St Leonard’s Youth and Community Centre in Bootle, which provides wide-ranging support and friendship to local people.

She leads weekly groups including a craft hub, local weekly guided walks, a women’s space group and a men’s space group (growing numbers of local men are struggling with living and mental health).

11 people in a line on a path, among some trees
Members of the St Leonard's walking group in Derby Park, Bootle

Jo also promotes regular cookery courses at St Leonard’s, a weekly community lunch and helps support people to access an in-house benefits advisor and onward referrals. St Leonard’s operates a weekly foodbank and Your Local Pantry and also offers over-55’s activities. 

She also supports lots of people who present at St Leonard’s in crisis and helps them access the most appropriate services or support.

This could include people in fuel or food crisis, debt, housing or health issues. Jo also recruits volunteers (people who have previously accessed St Leonard’s for help) to help support the range of activities on offer.

"We don't want to do something new if it doesn't empower people"

“We regularly hear of the challenges pre and post pandemic, in the local community; inadequate housing, debts and money difficulties, unemployment, and issues around basic public services. 

“People tell us they feel undervalued and ignored by local provider services and regularly speak about their frustrations with regard to their local environment; refuse collection, fly tipping, pest control and street cleansing. 

“People have unaddressed environmental issues outside their front doors and are struggling financially. We had one woman here saying she felt like she was feeding the meters more than the children. 

“I was born and brought up in Waterloo, so a near neighbour of Bootle. I can walk a short distance from here and be in a really wealthy area where rich footballers live, but here there is real poverty. Sefton is strange like that – a single street can separate wealth and poverty.

“What we really want to do came out of the Pantry, and us wanting to do Speaking Truth To Power. We want a community forum where people can come and offload if they need to, but we want to do it in particular way and place that then has the task of trying to address these challenges.

“Last year local registered social landlords commissioned a consultation of ‘The Poet’s Streets’ around here (streets named after poets). A lot of people were bringing different challenges, but not talking about what they themselves might be able to do, or finding confidence and power within themselves to address challenges or difficulties.

“We don’t want to do something new if it doesn’t empower people. I want people to have the resources, and to take things on.

“The men’s space and women’s space and craft group have generated friendships and power that have evolved beyond what we do here. It has spread way beyond St Leonard’s. So now if someone is ill or in hospital or low, then other people have provided support mechanisms that have grown out of the groups here.”

Gathering ideas & power together

About a dozen people, sitting in a circle in a training room, with a projector screen at the front.
A Speaking Truth To Power training day in Manchester in January 2024.

The Speaking Truth to Power programme aims to support people in low-income neighbourhoods to jointly harness local insight, expertise and resolve, to tackle challenges and injustices together.

In August, emerging leaders gathered in Manchester to learn new approaches, and share ideas, and Jo was among them.

She began working in the voluntary sector in the early 80’s working for different charities locally, regionally and nationally, mainly in the areas of mental health and social inclusion. Jo then chose to come back to her home patch.

She says: “What drives me is people and community. I am passionate about equality and want to see that here in Linacre ward where local residents can have something more to hope and aspire to.

“I like working in the community. It’s a privilege. Everything we do is a real privilege. We are involved in people’s lives every day and people trust us to disclose some uncomfortable and challenging things, and it’s a privilege. We are making a difference every day, helping give people hope. 

“I don’t know if the phrase ‘Truth To Power’ will resonate with people here, so we are trying to come up with the right name.

“But I’ve spoken to a lot of people here and in the food bank and asked if they would like to be involved, and the answer was an overwhelming yes. It might look at neighbourhood litter or crime or domestic issues or rats but we want to take it a step further, so our work is enabling people to move forward and address things.”

About 12 people in a group, with Liverpool Anglican Cathedral in the background
A group from St Leonard's outside Liverpool's Anglican Cathedral

Bootle 10 years from now...

“Ten years from now, I would like to see a real financially healthy, viable Linacre ward, where there are prospects for young families and children. We talk to a lot of families and in the “cradle to career” surveys we talked a lot about prospects for young children, how they can get a good schooling and a journey to a career.

“The majority of people here are unemployed. I would like to see people with young children being given the right support earlier on, with access to schools and nursery services, and access to community mental health services. Mental health is a big challenge here.

“I would like people to have the power to challenge things, to be able to challenge the powers that be, whether that’s social housing providers, private landlords, the council etc.

“I would like to see a healthier, vibrant Linacre ward, where people are happy to live.” 

SPARK newsletter summer 2024

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

Stories that challenge: Sarah and Rosie’s health

Dreams & Realities: welcome to an incredible exhibition

Building hopes and dreams in Bootle

This outrageous, counter-productive Budget marginalises people with least

A sermon for Church Action on Poverty Sunday

Stories that challenge: Emma’s road to church

Sheffield voices: We need higher incomes and more for young people

Cost of living scandal: 7 truly useful church responses

Stories that challenge: Alan & Ben

7 ways a Your Local Pantry could help YOUR community in 2024

Artist Don: How Leith Pantry has helped ease my depression

Are we set for a landmark legal change on inequality?

SPARK newsletter winter 2023-24

Let’s say what we truly want society to look like – Let’s End Poverty

Charity and church leaders call for urgent action on rising poverty in the UK and around the world

New Year’s Honour for inspiring campaigner Penny

Meet our five new trustees

SPARK newsletter summer 2024

Silhouettes of eight people, against different coloured backgrounds

Stories that challenge: Sarah and Rosie’s health

Liudmyla and Stephen, with her portrait

Dreams & Realities: welcome to an incredible exhibition

Liudmyla and Stephen, with her portrait

Learn the story of Dreams & Realities, and the stories behind it

A powerful new art exhibition has been launched, telling the stories and aspirations of people in poverty.

Dreams & Realities is on display at St Mary’s Church in Sheffield, and will then go on tour as part of the Let’s End Poverty campaign.

Dreams & Realities of people's lives

Stephen Martin, a local artist, has painted acrylic portraits of nine people living in poverty in Sheffield, including himself.

Each picture shows the person, something that depicts their economic reality, and something that represents the dreams and ambitions they would pursue if they were not held back by poverty and unjust systems.

The project has been coordinated by Yo Tozer-Loft, who runs a community choir at St Mary’s, with support from Church Action on Poverty.

Three of the portraits on the wall

Yo says:

“I really hope the paintings show the reality for a lot of people in this country. There are still a lot of people constrained to live on the front line of poverty and I really hope this project shows their humanity by their dreams. All humans have dreams and as humans together we should enable each other’s dreams, and Governments should enable the health and the dreams of the people they govern.”

————

Stephen's story

Stephen’s self-portrait includes a wellbeing journal, which has helped him with his mental health.

The background is black, as the electrical circuits in Stephen’s home blew more than ten years ago, so he has lived without electricity ever since. His income is only £340 a month.

Stephen says:

“Just being on benefits, I feel the pinch come the end of the month. It’s a struggle just to get by day by day, so I hope the message we’re putting over in this exhibition about poverty does have an effect in the General Election campaign and it does become a major issue within the election.”

————

Dreams & Realities: The launch

A shot from upstairs of the choir singing in St Mary's Bramall Lane

The exhibition was launched at St Mary’s in March, at a special celebratory concert, which also included the choir singing Disney songs.

The initial response to the paintings was incredible, with many people deeply moved by the stories, and encouraged to get involved in the Let’s End Poverty campaign.

The people behind the paintings

Wayne stands in front of his portrait
Wayne in front of his portrait at the Dreams & Realities launch.

The stories in the exhibition are deep and diverse.

For instance, Wayne, who is homeless and who supports people hit hard by the cost of living scandal, dreams of empowering others to overcome issues such as racial injustice and homeless.

Liudmyla moved to Sheffield as a refugee from Ukraine, and the school where she had taught was bombed in the war. Her dream is to gain English teaching qualifications so she can resume teaching, but the great uncertainty around the war and her right to stay in England are represented in the painting by a crystal ball.

  • More detail on all the individual stories is included in the exhibition.
  • Dreams & Realities will be on display at St Mary’s Church, Bramall Lane, Sheffield, until the end of April. See the church website for opening hours.
  • The exhibition will then tour nationally in support of the Let’s End Poverty campaign. 

SPARK newsletter summer 2024

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

Stories that challenge: Sarah and Rosie’s health

Dreams & Realities: welcome to an incredible exhibition

Building hopes and dreams in Bootle

This outrageous, counter-productive Budget marginalises people with least

A sermon for Church Action on Poverty Sunday

Stories that challenge: Emma’s road to church

Sheffield voices: We need higher incomes and more for young people

Cost of living scandal: 7 truly useful church responses

Stories that challenge: Alan & Ben

7 ways a Your Local Pantry could help YOUR community in 2024

Artist Don: How Leith Pantry has helped ease my depression

Are we set for a landmark legal change on inequality?

SPARK newsletter summer 2024

Silhouettes of eight people, against different coloured backgrounds

Stories that challenge: Sarah and Rosie’s health

Liudmyla and Stephen, with her portrait

Dreams & Realities: welcome to an incredible exhibition

Church Action on Poverty's logo, alongside the Houses of Parliament

This is Church Action on Poverty’s statement on the 2024 Budget. It includes the views of our expert advisors with direct current experience of poverty.

Church Action on Poverty's logo, alongside the Houses of Parliament

The 2024 Budget further punishes and marginalises people on the lowest incomes, and is outrageous and counter-productive.

That’s the message from social justice campaigners with Church Action on Poverty.

Recent Budgets have rarely provided adequate support or good news for people on low incomes, despite polling showing that 88% of the British public think more should be done to tackle poverty.

Further cuts to public services will harm communities and people who are most likely to need public systems such as health services, libraries, social housing, public transport, and children’s and youth centres.

Calculations by Church Action on Poverty indicate a two-parent family on £60,000 a year will be about £3,100 better off a year as a result of the Budget and Autumn statement, including cuts to National Insurance and the increases to child benefit given only to higher income households, whereas the childcare assistant or teaching assistant charged with looking after their children on a starting salary of £14.500 will be a grand total of £80 better off. 

How can this be right? 

And someone unable to work due to disability or caring responsibilities will not be better off by a single penny. How can this be right?

Our advisers, all of whom have direct current experience of poverty, have called for a more just tax system, action to fix the UK’s broken housing system; and investment in a long-term future for everyone rather than short-term tweaks.

A headshot of Stef Benstead ,with a quote: "When they are spending money, it should be to help poorer people, not funding tax cuts for richer people."

Stef Benstead said:

“I would want them to be increasing taxes on the wealthiest people so they can fund social care and health care properly. When they are spending money, it should be to help poorer people, not funding tax cuts for richer people.

“The Chancellor’s supporters say countries with low taxes grow fastest, but that’s only in the short term, because you then have a bust. IMF research has shown that the more equal countries grow fastest in the long term because they do not have that bust afterwards.

“We need to look at what makes for steady long-term growth. The answer is to reduce inequality. Data shows we could be much more equal – more equal than Scandinavian countries – and still improve growth. We need to look at what makes for long-term growth, and the way to do that is taxing the very richest, because they currently take too much for themselves.

“It’s not a matter of punishing wealth, but of deterring rich people from over-paying themselves excessively while their staff are struggling on low pay.”

Tracy Porter said:

“We need to commit to meaningful co-production policies with people who have experienced the impact of previous policies.

“I would also like to see more done to increase digital inclusion. So many people have not got the same access, and that means their opportunities are limited, whereas if they had equal access then people could achieve more.

“It affects young people at school and also older people, who maybe are told to use technology to do tasks and send things. It’s not just about having the technology, but also knowing how to use it.

“It is estimated that it costs around £120,000 to raise a child to the age of 18. £120,000 is a lot of money for any household, but if you find yourself unfortunate enough to be at the bottom of the economic scale it becomes even more difficult to provide the basic essentials for that child to flourish.

“A lot of families, in reality, have very few choices. Some families have a disability, learning difficulty or mental health issue, some have to cope with all of these things as well as raising a child to the best of their abilities.

“Without fair access, children can quickly fall behind and the gap between what they and their peers can achieve grows ever wider. Enter the cost of living crisis and the cracks that were already there, become chasms that are swallowing families up.”

A headshot of Wayne Green, with the quote: "We need to act on housing, instead of MPs seeking to water down policies like evictions laws."

Wayne Green said:

“A wealth tax is needed. We need an asset tax. Once you earn more than £250,000 you pay less tax as you can afford to invest in assets and shares. If you had something like a 3 percentage point tax increase on offshore wealth, it could pay for so much – it could pay much of our national debt off.

“The very wealthiest people have millions or billions. There is an imbalance – we should be taxing the super rich and investing in this country long-term.”

“We need a better form of community tax. It does not work properly. And we need to act on housing, instead of MPs seeking to water down policies like eviction laws.”

Wayne had said he would be worried about the ending of the Household Support Fund, which he had said would be outrageous. In the Budget, it was extended by only six months.

A headshot of Mary Passeri with a quote reading: "I think the rich are going to keep on getting richer, but if you are on a low income it disproportionately badly affects you."

Mary Passeri said:

“I think the rich are going to keep on getting richer, but if you are on a low income it disproportionately badly affects you.”

Alisha Barton said:

“I think it will make no positive difference to me, and cutting National Insurance inherently means a cut to public services.”

Sydnie Corley said:

“What needs to really change is the difference in income when you try to get back into work, or into more work. I am part time and if I go over the income thresholds, I lose everything else suddenly.”

Contributors to this article are member of Church Action on Poverty’s Speaking Truth To Power programe.

  • Stef Benstead is advisor on disability and social security, and also the author of Second Class Citizens: The Treatment of Disabled People in Austerity Britain.
  • Tracy Porter is a trustee and digital inclusion advisor.
  • Wayne Green is advisor on unemployment, social security and policy.

SPARK newsletter summer 2024

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

Stories that challenge: Sarah and Rosie’s health

Dreams & Realities: welcome to an incredible exhibition

Building hopes and dreams in Bootle

This outrageous, counter-productive Budget marginalises people with least

A sermon for Church Action on Poverty Sunday

Stories that challenge: Emma’s road to church

Sheffield voices: We need higher incomes and more for young people

Cost of living scandal: 7 truly useful church responses

Stories that challenge: Alan & Ben

7 ways a Your Local Pantry could help YOUR community in 2024

Artist Don: How Leith Pantry has helped ease my depression

Are we set for a landmark legal change on inequality?

SPARK newsletter winter 2023-24

SPARK newsletter summer 2024

Silhouettes of eight people, against different coloured backgrounds

Stories that challenge: Sarah and Rosie’s health

Liudmyla and Stephen, with her portrait

Dreams & Realities: welcome to an incredible exhibition

Silhouettes of eight people, against different coloured backgrounds

This is a guest series, of stories that challenge and change. These are intentionally contrary stories that push back against negative ideas, and force us all to re-examine negative stigmas and stereotypes. They are longer than our usual blogs, and we encourage you to read them when you have the time to do so in full.

These stories are told by Stef Benstead, a social justice campaigner, Manchester Poverty Truth Commissioner, and an expert on the mistreatment of disabled people.

Silhouettes of eight people, against different coloured backgrounds

Meet Sarah

She’s definitely a scrounger. In fact, the street is full of them. You could make a programme about it.

They claim to be ill, and even walk slowly as if to make the point, but they’ve been seen to strim a lawn when they want to. Two of them are active smokers, so their difficulties are their own fault: if they stopped smoking, they’d have more health and more money. You can’t take seriously any incapacity for work that’s based on smoking. 

Another one has been seen dancing in her garden, yet says she has major back pain. You couldn’t make it up. They’re all cheats. It’s no wonder the country is going to the dogs.

What people think they see

Sarah is one of the ones who can often be seen out gardening. And not just her own garden; she’ll be out in her neighbours’ gardens too, helping with those. Sometimes she’s behind a lawnmower; sometimes she’s digging out dock and brambles; sometimes she’s cutting down trees. You might see her out with a cocker spaniel, taking him to the local park, or walking to the nearby shops.

Most assessors, of course, know exactly what she is. But it only takes one to miss it, and let Sarah slip through the net, and give her benefits she shouldn’t get for longer than is appropriate. 

The others know that someone as young and healthy-looking as her, bar paralysis or other identifiable injury, has no real reason to use a wheelchair. And when they ask her what she does, and she says that she does research on disability and social security, all their initial impressions are confirmed.

Who can measure another's pain?

This is someone who knows the benefits system well; who has made a practice of studying it; who has learnt the words to say and how to say them. Her words, therefore, can’t be trusted. 

She is saying what she knows will get her benefits, not what is true about herself. So she is rejected for benefits, on the grounds that she looks healthy and therefore must be healthy, and she knows too much about her alleged illnesses and the benefits system to be telling the truth about them.

Of course, if you asked someone to declare how much pain another person was in based on how they look, they wouldn’t be able to do it.

Nor could they tell you how much dizziness that person feels, or whether it is more of a vertigo or a fug in the head than tingly dizzy. They  couldn’t tell you whether the person feels sick, or hungry, has stomach pain. 

You can’t look at someone and know anything about a vast range of health problems, injuries, and symptoms. 

But that doesn’t stop you trying.

Rare conditions and lazy judgments

Sarah claims to have a condition that means her greatest pain and exhaustion come not at the time of activity, but a day or two later.

But that’s ludicrous. Whoever heard of such a thing? Certainly not any of the benefit assessors or appeal panel members who decide whether or not she deserves benefits.

They are of the opinion that if Sarah’s health declines, then that would be the appropriate time to claim benefits. But if she herself reports feeling fine now, in the moment, then she is fine.

And nor have any of the politicians who design benefit assessment processes heard of such a thing. What they have heard of, though, and told themselves, is people who have wrong attitudes and beliefs, who would be fit for work and able to look after themselves if only someone would tell them so.

When people like Sarah go out and mow lawns, or attend multi-hour meetings, it just reaffirms to observers that these people aren’t really ill. When they want to do something, they can; it’s only when they don’t want to do something that suddenly they are too ill.

It is a shocking moral laxity that needs to be rebuked and punished, not praised and rewarded, but sadly too many politicians of all stripes have been too lax in the benefits system. The assessment criteria need to be tightened, the money that is paid out needs to be cut, and these people need to be required to prepare and look for work in return for the money they receive.

Meet Rosie...

It is especially important that all this happens, so that people like Rosie can be properly protected and cared for. Rosie has a genetic condition called hypermobility Ehlers-Danlos Syndrome (hEDS). This affects collagen, and as collagen is everywhere in the body her condition has an impact on everything.

It is said that if you were to take everything else out of the body, the collagen remaining would create a perfect replica of what was there. It is in your skin, your blood vessels, your ligaments and tendons, and the fascia that embed and surround every organ and tissue. It is no surprise, then, that when collagen goes wrong, nothing goes right.

Understanding your own symptoms

Rosie experiences a wide range of diffuse symptoms. Fatigue, pain, nausea, dizziness, muscle weakness, difficulty eating, digestive problems, generic inflammation, and more.

It is difficult to test for and prove these things. But when they come together like this, alongside hypermobile joints and evidence of circulatory problems such as Reynaud’s Syndrome and Postural Tachycardia – all things which can be tested and demonstrated – then the diagnosis of hEDS is easy.

And then a whole load of seemingly nebulous and generic symptoms actually make sense and are explained and explainable.

Having a diagnosis makes a huge difference. It means that Rosie understands what is going on in her body when her lymph glands swell and she develops a sore throat and feeling of internal inflammation.

It’s not ‘flu or any other virus; it’s what her body does when she’s over-worked, and it can therefore be avoided by reducing activity levels to keep within what her body can do. Where a respiratory virus is avoided by being careful in crowded places and observing good hygiene, overwork needs a different response. So it is important to know the difference, in order to safeguard properly against it.

It means that when Rosie starts to feel depressed, despairing, or panicked, she knows it’s not usually about her emotional situation. It’s about having done too much over too long a period of time, and her body is rebelling and going on strike in defence against the over-bearing brain.

When the usual remedy for depression is to go out and be active, Rosie now knows that her depression is physical, and that the remedy is to go to bed. This in turn means that she can now stave off suicidality, by knowing that the answer is not to work harder but to work less.

Post-exertional malaise

Stock image: a trowel on grass

Rosie experiences a classic symptom: post-exertional malaise (PEM). This symptom seems to be poorly understood by doctors, let alone benefit assessors, for whom the concept that activity now might cause worse symptoms tomorrow rather than in the moment is apparently bizarre. 

But for people with Rosie’s and related conditions, it is extremely familiar. Doctors who understand Rosie’s condition usually have more familiarity with PEM, but still it is difficult to get across to someone who has never experienced it that you might feel okay today doing X, but tomorrow you will feel awful.

Whilst the answer to Rosie’s physical depression is to rest, that is nevertheless a boring and meaningless existence. And that itself brings depression.

So sometimes, Rosie has to find physical activity to do, that is enjoyable and meaningful, to counter depression that comes from doing, and being able to do, little. For Rosie, that might include gardening. Often this is done sat on the floor with a hand tool, because standing up causes Rosie’s heart rate to soar, and that is a sure trigger for PEM.

When the body battery crashes

One time, Rosie took out a lawnmower, creeping behind it very slowly, in order to help out a neighbour whose birthday was the next day and whose grass was overlong. Rosie’s heartrate hit 170bpm. The targeted heart rate for her age during high-intensity activity is 160.

Activity like that makes Rosie ill the next day. She has fibromyalgia as a consequence of over-working, physically and mentally, in her early 20s when she didn’t yet know that she had hEDS. This flares up as a result of activity and, despite her opioid patches, leaves her pacing the floor in tears if she has really overdone things.

Her body seems to act like it has a virus when it has done too much, with all the sore throat and fuzzy head and aching, heavy limbs and swollen glands that come with it.

Rosie recently acquired a second-hand fitness tracker, which confirms that overactivity makes her ‘body battery’ crash and stay down for days. Her resting heart-rate also increases during these periods.

Sincerity and scorn in one place

Someone like Rosie, presenting to a benefit assessor with only the list of generic symptoms, is easily dismissed as a fraud and malingerer.

The assessor, despite allegedly being trained to assess functionality and not diagnosis, nevertheless treats completely differently two people with the exact same symptoms, but one has a clear tested diagnosis, and the other has no diagnosis.

One is taken  seriously and even recognised as having a lifelong condition. The other is scorned and rejected. The very same symptoms that confirm a genetic condition in the one are taken as evidence of laziness and hypochondria in the other.

See Sarah and Rosie together...

But Rosie is the same person as that malingerer, Sarah, whom we discussed earlier.

You can’t see any of Rosie’s symptoms: her pain levels; her fatigue; her brainfog; her internal inflammation, sore throat, and swollen glands; her drained ‘body battery’ or raised resting heart rate; the way her heart rate shoots up just because she’s upright. A tilt-table test proves the Postural Tachycardia (PoTS) (a heart rate that shoots up when upright), but not the actual debilitating symptoms it causes for Rosie, which might be different for someone else. 

And when a doctor does a simple version of the test, asking Rosie to move from seated to standing, they have generally failed to account for the fact that for someone like Rosie, with severe PoTS, just being seated rather than lying down has already elevated her heart rate, so the scope for her heart to go even higher when standing is limited.

If they think they’re treating Sarah, not Rosie, then they dismiss the evidence for PoTS and tell her that her problems are all down to a lack of fitness.

Who do you see?

A graphic of two overlapping head silhouettes, one in pink, one blue

So the politician, the benefit assessor, the complaining neighbour, and even some doctors only see Sarah.

They never realise they’re dealing with Rosie. They never realise the harm that they cause with their misguided advice, such as to be active when Rosie desperately needs rest, which just makes her physical illness and therefore mental health even worse.

They never realise the impact of their misguided refusal to give Rosie enough money to live off in the belief that going out and getting work is what will make Rosie better, rather than driving her to such physical illness that she despairs of life.

They never realise the damage they cause when they phone the ‘benefit fraud’ hotline, to report Rosie for fraud, because they only see Sarah and not the desperate illness underneath.

In telling her story for this blog, Rosie remained seated with her legs on a footstool to help counter her PoTS. Keeping her legs horizontal helps to let her body know that it really doesn’t need to send the heart-rate so high. Nevertheless, Rosie’s heart spent most of the 30 minutes involved above 120bpm. She was suffering from particularly bad PEM, having over-done things whilst spending time with her two nieces over a week before, and from which her body had not yet recovered.

Dangers are caused when politicians do not understand people

This is the reality behind people like Sarah, and the neighbours you see out walking a dog or strimming their lawn or dancing in their garden.

This is why you will hear them sometimes talk about attending meetings. You see them engage in activity that brings meaning and joy to their life, enabling them to have a reason to keep going. What you don’t see is the impact on their body: the pain, the exhaustion, the inflammation, the inability to eat, the difficulty walking, the vertigo and dizziness and nausea.

You don’t know the price that these people pay to participate at least some times, on their terms, at their discretion.

This is nothing like attending work at someone else’s discretion, without the opportunity to engage only as and when able, or to rest and still remain financially secure.

But until politicians and public understand what it’s really like to be chronically ill, people like Rosie and Sarah will continue to be harmed by the dangerous policies.

SPARK newsletter summer 2024

Church on the Margins reports

Church Action on Poverty North East annual report 2022-24

Stories that challenge: Sarah and Rosie’s health

Dreams & Realities: welcome to an incredible exhibition

Building hopes and dreams in Bootle

This outrageous, counter-productive Budget marginalises people with least

A sermon for Church Action on Poverty Sunday

Stories that challenge: Emma’s road to church

Sheffield voices: We need higher incomes and more for young people

Cost of living scandal: 7 truly useful church responses

Stories that challenge: Alan & Ben

7 ways a Your Local Pantry could help YOUR community in 2024

Artist Don: How Leith Pantry has helped ease my depression

Are we set for a landmark legal change on inequality?

SPARK newsletter winter 2023-24

Let’s say what we truly want society to look like – Let’s End Poverty

Charity and church leaders call for urgent action on rising poverty in the UK and around the world

New Year’s Honour for inspiring campaigner Penny

Meet our five new trustees

Feeding Britain & YLP: Raising dignity, hope & choice with households

Parkas, walking boots, and action for change: Sheffield’s urban poverty pilgrimage

Dreamers Who Do: North East event for Church Action on Poverty Sunday 2024

Autumn Statement: Stef & Church Action on Poverty’s response

Act On Poverty – a Lent programme about tackling UK and global poverty

How 11 people spoke truth to power in Sussex

Obituary: Michael Campbell-Johnston SJ

Annual review 2022-23

SPARK newsletter summer 2024

Silhouettes of eight people, against different coloured backgrounds

Stories that challenge: Sarah and Rosie’s health

Liudmyla and Stephen, with her portrait

Dreams & Realities: welcome to an incredible exhibition