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.
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.”
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.
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.
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.
This was the context to a recent interview with Gareth Parry, the chief executive of employment organisation Remploy, which has £50m of contracts from central and local government to help disabled people get jobs or support them back into work.
Parry, who worked his way up Remploy after starting as a trainee almost 30 years ago, has depression, something that he says gives him a more personal insight into his job running employment support organisation (“It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos”).
He is a forthright speaker about how his personal experience influences his role at the helm of an organisation aiming to support people with mental health issues; he wants more senior executives to be open about mental ill-health, for example.
The organisation, however, has its critics. While Remploy was launched by the postwar government in 1945 to give disabled second world war veterans sheltered employment, the last factories closed in 2013 in line with the idea that mainstream employment was preferable to segregated jobs. Yet many felt the closures abandoned disadvantaged people.
More recently, in April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business. Critics say that being owned by Maximus undermines Remploy’s status as a champion of disabled people.
Parry rejects such suggestions: “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.”
Longer term, Parry believes Remploy could take on international work, like advising other countries on closing sheltered factories. He adds: “Our mission around equality in the workplace has always been and is within the confines of the UK, but if we want to make a real difference in society in the UK, the opportunity we have now is to say ‘why stop there?’” Future issues in employment support, he adds, include sustaining an ageing workforce, with help for issues like dementia in the workplace and other age-related conditions.
In terms of other changes, Parry’s words on the rise of online support (as opposed to face to face advice) reflect a general trend towards more online and digital support: “I’m not suggesting online will replace face-to-face services, but the idea of giving the power of choice to the individual as to how they access services is meaningful”.
Remploy is almost unrecognisable in terms of its remit, ownership structure and operations since its inception more than 70 years ago; as the government and local government contracts on which it once relied are dwindling, it will be interesting to see where the next few years take Remploy – and, most importantly, those it helps.
The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.
He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”
An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”
What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.
He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”
He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”
In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.
While many of the creatives have had solo exhibitions since joining the project, this is the first time they are showing work that outlines how their experiences, including recovery, have influenced their art. The show asks visitors to consider the question “how far can one life-changing incident be seen in the artistic work you create?”.
In a related event this Saturday, the collective, which began 10 years ago, is involved in an free art workshop at London’s Southbank Centre. The event involves the artists encouraging the public to participate in on the theme of “what love means to you” with contributions acting as the basis for a collaborative piece at the Submit to Love studio. The workshop takes place in the Clore Ballroom at Royal Festival Hall on Saturday 11am – 2pm and is recommended for ages six upwards.
According to Headway, survivors of brain injury are often excluded from society, have lost skills, occupations and cannot communicate as they used to; art is an outlet for communication and self-expression. The charity is keen to reposition art from a simple rehabilitation activity to “both a vocation and passion project”.
* The exhibition, sponsored by Hyphen Law, is open 9am-6pm (Mon-Sat) and 09.30am–2pm (Sun) until Tuesday 23 February 2017 and entry is free. Venue: Stratford Circus Arts Centre, Theatre Square, London E15
Encouraging dementia-friendly design is an important part of the debate and some of the innovative developments in this area are a welcome contrast to the lack of progress elsewhere.
Care and support charity the Abbeyfield Society has unveiled a £9m new development, Abbeyfield Winnersh, in Berkshire. Early images give one an idea of how design can be used to support people with dementia. Granted, the images look a bit eerie on account of the noticeably absent people, but they at least offer a glimpse of what the new developments in dementia design can offer.
Each of the 60 residents in Abbeyfield Winnersh will have their own ‘window’ next to their front door (pictured above) – effectively a memory box with instantly recognisable, personal items to help them identify their own door.
All bedrooms – all leading onto an outdoor space – are arranged in six, circular clusters of 10 ‘households’ aiming to offer a more homely, community feel.
The furniture and furnishings have been chosen to reduce anxiety with, says Abbeyfield “calming colours and textures chosen to stimulate the senses and promote reminiscent memories”.
Facilities for family and friends include a playground for young children, above.
Involving the friends and relatives of care home residents in the life of a care home is a crucial and not often acknowledged issue in dementia support. As a previous post on this blog by Kate Murray stresses, the importance of helping children understand and be aware of dementia cannot be underestimated.
Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.
When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.
This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.
And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.
* Names and details in the article have been changed
Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.
The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.
Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.
The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.
Here, Kay explains why her project is so vital:
“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.
“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.
My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.
I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.
I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.
There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.
The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”