MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

My write up in the Guardian today looks at the condition, which is regarded as relatively rare. Public awareness of MS is low, but recent innovations in treating and assessing MS are creating a fresh focus on the disease.

Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients?

You can read the views of MS specialists, health experts, campaigners and people with MS on these issues in the full piece here.

Gallery: diversity and dance at London’s Southbank

Step Live performance, Southbank, London, July 2016

On Monday, the UK’s largest inclusive secondary school dance programme puts on its annual festival of youth dance at London’s Southbank. Over 700 young people from across London and Essex will be involved in the performance.

Step Into Dance is a partnership between grant-making organisation the Jack Petchey Foundation and the Royal Academy of Dance. The scheme runs extra-curricular classes and performance opportunities across London and Essex, enabling young dancers to develop their talent and mix with a diverse range of people.

The project reaches 200 mainstream and special needs schools a year and since its launch 10 years ago, has worked with hover 50,000 young people.

The gallery of images here show the project’s regional performance events and last year’s live festival.

 

Step Into Dance at the Quest Academy, Croydon. Photo: Alicia Clarke

 

Step Into Dance at the Quest Academy, Croydon.Photo: Alicia Clarke

 

Step Into Dance at the Quest Academy, Croydon.Photo: Alicia Clarke

 

Pupils at Park View School, Haringey, London.Photo: Alicia Clarke

 

Pupils at Park View School, Haringey, London.Photo: Alicia Clarke

 

Park View School, Haringey, London.Photo: Alicia Clarke
Step Live performance, Southbank, London, July 2016.Photo: Mark Lees

Pioneering performers: festival season for inclusive dance studio

Adrienne Armorer at a Step Change Studios session (photo: Step Change Studios)

Step Change Studios is the first dedicated pan-disability inclusive Latin and Ballroom dance class in London.

On Saturday, the Westminster-based school kicks off one of many summer season showcases at the Liberty festival at the Olympic Park .

Forthcoming summer appearances include performances and workshops at the Together Fest at the Arts Depot in North London on July 22. The school will also put on an inclusive dance demo at the Disability Sports Coach Summer Festival in West London on July 28.

The pioneering project’s last class before the summer break is on Saturday, and founder Rashmi Becker stresses there are no restrictions on ability, in terms of who can join in.

Step Change, which is based at the Abbey Centre and launched earlier this, is open to all. As Rashmi, a disability advocate as well as a dance specialist, explains: “We have people with learning disabilities, autism, wheelchair users with different physical and neurological conditions such as MS and cerebral palsy, people with visual impairments, young and older people…There are simple things I do to enable people to join in – for example I meet people with visual impairments at the station and support them to the dance space”.

Adrienne Armorer, for example, gave up her beloved salsa 10 years ago after developing the physically debilitating condition multiple sclerosis (MS). But she has taken up dancing again through Step Change, after hearing about the project through her local MS society.

Here’s how Adrienne, who details her experience in full on this blog, described her first Step Change class: “Wow – a 50:50 mix of wheelchair dancers and those without. Cool! A little warm-up and then we were off. I’m not a regular wheelchair user and get fatigued quite easily, so I was worried I wouldn’t be able to keep up. It was fine. Nuno and Rashmi [the instructors] are on hand to help and answer any questions. I also needed to ask one of the other wheelchair dancers how he was managing to turn his chair using just one hand. The hour flew by. What a great afternoon. We left on a high.”

For more information contact Step Change Studios Founder Rashmi Becker on 07976 363861, or email contact@stepchangestudios.com

Sexism, stereotypes – and getting sanitary bins on site

Recent graduates talk about candidly women in construction (photo: Leon Csernohlavek)

Do women get a good deal in construction?

This was the question debated by a group of young women in diverse roles in the construction industry for an article I’ve just done for Construction Manager magazine.

According the Office of National Statistics, women account for just 12.8% of the workforce. Then there is the gender pay gap – the construction and building trades’ supervisors have the highest in the sector, with men paid 45.4% more than women. Little wonder then that the number of women in construction has dropped by 17% in the last 10 years, compared to a 6.5% drop for all workers in the industry.

You can read the full piece to see why it makes economic as well as ethical sense to increase the numbers of women in the industry. Among the topics debated were the fact that more action is needed to break the stereotype that construction is a man’s industry.

The roundtable heard that issues such as a lack of female toilets or sanitary bins are common. As one participant said, if a woman working on site has to leave the project several times a day to find a public lavatory, there is a strong productivity case – as well as a human rights case – for installing facilities.

Thanks to all who took part in what was a fascinating and determined debate – and all power to these strong young women and their efforts to shake up a male-dominated sector.

New report demands more support for vulnerable children

Families at a Spurgeons’ children’s centre, Aylesbury, Buckinghamshire (photo: Bronac McNeill)
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity

New research, which we launch today, paints a picture of far too many young families struggling.

Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.

The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.

And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.

What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.

It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.

The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.

We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.

When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.

The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.

Spurgeons works to support families (photo: Bronac McNeill)

The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.

All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’

We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.

It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.

In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.

About the research
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
* When asked about the three issues they are most concerned about for their children, either now or in the future.

People power can transform communities – we need more of it

Guest post by Tracy Fishwick, chief executive of Transform Lives

Leeds Community Homes is striving for a people-powered community housing revolution, placing the new organisation at the cutting edge of housing practice.

The not-for-profit group has raised £360,000 to invest in 16 permanently affordable homes through community shares (a type of share capital called ‘withdrawable shares’ issued by co-operatives or community benefit societies). With the first tenants due to move in by next April, the organisation’s #peoplepoweredhomes campaign is an innovative way to create housing developed by local people, to meet the housing needs of local people. The project wants to create 1,000 affordable homes over the next decade.

People-focused housing solutions are at the heart of the People’s Powerhouse event taking place next month. The housing group’s work in Leeds is the kind of positive story of local change that we hope will inspire delegates to recreate similar projects in their own communities. More good practice like this is vital at a time of chronic housing shortage, with housebuilding falling almost 100,000 homes per year short of achieving the government’s ambition.

You may have read about the People’s Powerhouse which was launched in February and originally billed in the press as “a rival ‘northern powerhouse’ conference to one that advertised 15 male speakers but no women and just 13 of all 98 listed speakers were women”.

Leeds Community Homes, Plus Dane Housing and my own company, Transform Lives, are just some of the organisations taking part. We hope the People’s Powerhouse will help create a dialogue about inclusive, good growth, and its potential to transform communities and lives across the North of England.

Other work worth replicating includes Give Get Go, which Transform Lives collaborates on with a group of housing organisations. The initiative supports social housing tenants into work – connecting unemployed people to employers through volunteering and mentoring, growing skills and confidence and creating jobs. Key to the project’s success is bringing civic institutions and leaders together for the first time to work collaboratively in Liverpool, including the University of Liverpool, Everton FC and the National Trust.

We also work with Plus Dane Housing on its Waves of Hope Big Lottery programme, which aims to tackle homelessness and other complex barriers to work. In just two years, the project has supported 236 people, 83% of whom say their rough sleeping has been reduced. And 67% report a reduction in substance misuse. Both Plus Dane Housing and our other partner, the University of Liverpool, will be showcasing this work at the People’s Powerhouse, underlining the difference we can make when we find good ways of working collaboratively and locally.

Our hope is that we will build a long-term movement for change that supports good and inclusive growth in the North with a particular focus on how people are the key to growth. The aim is to include all sectors and sections of the community, harnessing the combined skills and leverage of the public sector, voluntary, community, civic leaders and business.

As Lord Victor Adebowale, chairman of Social Enterprise UK and chief executive of social enterprise Turning Point, says: “’People’s Powerhouse’ perfectly reflects our vision for economic investment in the North of England.” Social enterprises often find innovative solutions to social issues and as Lord Victor, a People’s Powerhouse keynote speaker, adds: “We cannot allow anyone to be left behind. Investment in the North must be inclusive and must be used to support communities as well as businesses, adding value to the lives of real people.”

* The People’s Powerhouse event takes place on Wednesday 12 July from 10am-4pm at Doncaster Rovers Football Ground. For more information and to register see the website. Discounts are available including for young people and for small enterprises and charities.

Election: voting support for people with learning disabilities

Campaigner and self-advocate Gary Bourlet on politicians

The Conservatives’ manifesto pledges on social care have been both controversial and muddled, but at least the issue of support (and how we pay for it) is finally a subject for mainstream national debate. Campaigners have long argued that plans to fix the broken social care system must be high on the political agenda, but many of the people who rely on it most are rarely wooed by politicians – as the above quote from Gary Bourlet makes clear.

And while more than a million people with a learning disability are entitled to vote on June 8, according to social care provider Dimensions, only around 10% of people with learning disabilities vote. This is generally, as campaigner Gary Bourlet once told me about politicians, because “they don’t make it accessible to us … they talk in jargon.”

The links below offer accessible resources and general voting guides to support people to vote and find out more about election issues (I’ll update this roundup as – hopefully – more is added).

The manifestos (to be updated):
Liberal Democrats – easy read version available pdf

Labour – accessible formats here.

Conservatives – easy read and accessible formats manifestos here.

The Green Party – “All manifestos and alternative formats” here, including easy read, braille and audio.

There is no mention of how to get an accessible version of the UKIP manifesto.

Campaign for accessible manifestos from Mencap: “We want people with a learning disability to feel part of this election. But we need your help.”

Guides to voting:
Easy read guide to voting in the general election published by the Electoral Commission and Mencap – pdf: “People with a learning disability have as much right to vote as anyone else. Don’t let anyone else tell you different.” (See also this pdf from the Electoral Commission on disabled people’s voting rights).

Easy read guide to voting from Inclusion North: “The guide has lots of links to lots of information about how to vote.”

Love Your Vote is “a campaign run by Dimensions to support people with learning disabilities and autism to understand and exercise their right to vote.”

Every Vote Counts from United Response is “aimed specifically at making the process easier to understand for people with learning disabilities and those that support them”.

Video guide to voting from Brandon Trust is a video guide that “explains how things work in the UK, what you need to do to register to vote, and the different ways you can vote”.

Link to a short film made by BTM’s learning disability group “encouraging everyone to register to vote by May 22”

Easy read summary of social care issues that all parties should consider, from VODG: “Our General Election statement sets out the issues VODG wants all political parties to consider during the General Election 2017 campaign.”

Event at 10.30am Sat 3 June University of East Anglia: “Learning Disability nursing students at the School of Health Sciences have organised an information day for people with learning disabilities so that they can find out more about voting in the upcoming general election…The political parties will be represented at this drop-in session and will provide accessible information and discuss their policies with people with learning disabilities.” Also see the related Facebook group.

RNIB on voting and elections for the visually impaired: “All voters have a right to vote independently and in secret, and local authorities have to ensure that polling stations are accessible to people with sight loss.”

Scope’s guide to accessible voting: “Accessible voting..Make sure your voice is heard this June.”

An “unbiased, easy read guide to party manifestos” from United Response

On social media:
You can also follow the hashtags #LoveYourVote #EveryVoteCounts #LDvote #EasyReadElection #LDVote2017 on Twitter.

* This post was updated on Mon 22 May with information on the University of East Anglia event, Green Party manifesto and Conservative Party manifesto, on Fri 26 May with RNIB info and Scope’s voting guide and on Fri 2 June with the United Response resource.

Related video: Kathy Mohan angrily asks what Theresa May intends to do to help people with mental health problems and learning disabilities.

Art for all: the Surrey gallery that targets a hidden need

Blue Figure, print, by Tendai from Feltham youth offender institution.

Leafy and affluent are default shorthands when describing the English county of Surrey, but the council ward of Westborough, Guildford, has the highest number of young people who are not in education, employment or training (NEET) in the county. Child poverty is high in Westborough, and around a quarter of all female prisoners in the UK are in custody in Surrey, including a number of lifers at HMP Send.

While the cash-strapped Tory-run council recently grabbed headlines with a threat to raise council tax by a huge 15% , this has done little to shed light on the social needs that exist in Surrey.

The issue of how Surrey’s general wealth hides specific pockets of deprivation is outlined in a new report into the social and community impact of Watts Gallery Artists’ Village (WGAV), in Compton, about a 10 minute drive from Westborough.

The gallery, opened in 1904 and dedicated to the work of Victorian artist George Frederic Watts, aims to transform lives through art – “Art for All” (Barack Obama, among others, has cited Watts as an inspiration). The report, Art for All: Inspiring, Learning and Transforming at Watts Gallery – Artists’ Village, describes the overlooked needs. It underlines the organisation’s role, for example, running artist-led workshops with prisoners and young offenders – I’m sharing some of the works here – as well as community projects, schools and and youth organisations.

The Journey, water-based oil on canvas, by Dena from HMP Send.

There are, as the report states, six prisons situated within 25 miles of the gallery, including two for young offenders and two for women. More than 420 prisoners and young offenders took part in workshops over the least year and WGAV has had an artist in residence at HMP Send for over 10 years.

Close Up, oil on canvas by Samantha from HMP Send, part of Watts Gallery’s community outreach work.

The report has been commissioned by Watts Gallery Trust and written by Helen Bowcock, a philanthropist and donor to WGAV and, as such, a “critical friend”. Bowcock argues that, despite the impression of affluence, Watts Gallery – Artists’ Village “is located in an area that receives significantly less public funding per capita than other areas of the UK”. The argument is that local arts provision in Surrey depends more on the charity and community sectors and voluntary income than it does elsewhere in the country (the concept that philanthropy, volunteering and so-called “big society” – RIP – only works in wealthy areas is something I wrote about in this piece a few years ago).

As public sector funding cuts continue and community-based projects are further decimated, Watt’s words are as relevant today as they were during his Victorian lifetime: “I paint ideas, not things. My intention is less to paint works that are pleasing to the eye than to suggest great thoughts which will speak to the imagination and the heart and will arouse all that is noblest and best in man.”

Brighton, mixed media on paper, by Jenny from HMP Send.

More information on the gallery’s community engagement and outreach programme is here.

Why we need to save sheltered housing from more cuts

“A certain amount of support has gone, so this has made people themselves more involved with each other – we get together more.”

I spoke to older people like Val, Rene and Jane, who live in sheltered housing on the south coast, for a piece in the Guardian this morning; the comment above reflects how the kind of housing they live in has changed radically in recent decades.

Rene spoke to me about the shock felt by residents as support services are cut, their criticism of government and the need to rally round and adapt (with peer-to-peer support, for example) as help is scaled back.

Over 20 years ago, for example, the Worthing Homes sheltered complex I visited had housing staff onsite who ran activities. Now, thanks to years of government cutbacks to sheltered housing support, there are three frontline staff rotating across up to 2,000 homes in the region, depending on need, and drop-in sessions run by external experts.

General sheltered housing, like that run by Worthing Homes, offers low-level support and self-contained accommodation for low income people aged 55 or older. Benefits include greater independence and less reliance on health and social care.

But this kind of housing has suffered thanks to historic and widespread cuts to the supporting people fund (the national programme for housing related support available to councils). Now, it is at further risk. The government was forced last year to defer its unpopular decision to impose a cap on housing benefit to supported housing; the proposal was included in a recent government consultation and is due to covered in a forthcoming green paper. Campaigners including the National Housing Federation (NHF) have been challenging the funding plans, with Age UK warning of “uncertainty about the future of sheltered housing in the social rented sector”.

Residents’ concerns over the loss of on site staff in sheltered housing are well documented, but years of central and local government cuts mean that it is now the norm for on-site staff to be axed in favour of telecare and floating support (short-term help with specific problems like benefits). There are no precise figures, but a 2012 review by Joseph Rowntree Foundation noted that as far back as 2009, local authorities estimated that by 2011, 38% of sheltered housing would have floating support, not on-site provision.

The approach in the Worthing region, an area known for its high proportion of older people, underlines the value of sheltered housing as the population ages, and mirrors similar moves across the country.

Communal garden, Pearson’s Court sheltered housing scheme in Worthing, West Sussex.

Simon Anderson, Worthing Homes head of customer services, says the landlord and residents have tried to work together since the council funding cut: “We were asked to do much more work for less money…but ultimately this is a housing provider and its residents coming together [through agreeing new initiatives] at a time of austerity”.

A 2012 Age UK report, Making it Work for Us [pdf] suggests “listening and responding to the views of residents should be fundamental in shaping what sheltered and retirement housing offers”. Simon explains: “Some people who moved in when there was someone [staff] here all the time…Now they’ll be thinking ‘I didn’t sign up for this’…So in conjunction with them, we began discussions on what the future service would look like. Social isolation was a significant issue for many”.

With the green paper on such issues due after the election, and further funding changes looming, Simon acknowledges “the lack of clarity and certainty”, yet he is resolute: “We have no plans to withdraw our sheltered schemes as they bring significant benefits to our residents as well as savings to the public purse by maintaining our residents’ health, tenancies and independence.”

You can read the full piece here.

Loneliness among older people: a new epidemic

Roy Warman’s wife, Phyllis, died in January 2015. Buoyed by well-wishers in the first few weeks of bereavement, the visits and telephone calls gradually dwindled, and he felt increasingly alone. Many of his friends have passed away, he does not have any family nearby and the couple never had children. He explains: “The longer it goes without speaking to someone, the harder it gets.” He describes loneliness as “one of the hardest things that you will encounter in life”, likening feeling low to “living in a void”.

Roy Warman credits Age UK with helping to turn his life around Photograph: Amanda Searle/Guardian

Today he is part of the charity Age UK’s telephone befriending service that matches older people with like-minded volunteers for friendship or phone calls. Roy has weekly phone calls with a volunteer he describes as “like the daughter I never had” and he also has regular visits from another volunteer as part of Age UK’s face-to-face befriending scheme.

The kind of weekly phone call or visit that Roy gets are among the solutions to help ease the loneliness epidemic affecting 1.2 million older people in England; I’ve written about this for the Guardian today.

Age UK says that 1.2 million older people are chronically lonely and that this has an adverse impact on mental health, and the challenge will increase as our population ages. In the next 20 years, England’s over-85 population is set to rise from nearly 1.3 million people to just under 2.8 million.

Read the full story here.

Saba Salman on social affairs