Category Archives: Employment

“Ah the whiff of that bread!”: my sister the baker

Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery
Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery

My talented sister and her colleagues allowed us to document a day in their working lives at the Lantern Bakery based at the Camphill community where she lives. The bakery offers work and training to people with learning disabilities. You can watch and listen to the talented team of bakers in this Guardian audio slideshow we created after our visit.

There’ll be more from the bakers of Camphill on this blog in the next week or so – they really are an inspiring, welcoming and talented bunch of people and work in what has to be one of the buzziest bakeries I’ve ever been to (listen to the audio slideshow – especially my sister’s numerous interjections – and you’ll see what I mean..).

For now, however, the slideshow photographs and the words of the bakers themselves speak volumes and do a better job than I could in a long piece of writing to reflect the bakery’s ethos and prove why schemes like this are so vital. Plus they make the most amazing things so, I’d like leave the last word to my sister, “ahhh the whiff of that bread!”

Jenny’s job, and why we need more like it

Jenny Dimmock at work, City Hospital, Sunderland (pic: Positive Negatives)
Jenny Dimmock at work in the pathology lab (pic: Positive Negatives)
Jenny Dimmock works in a pathology lab. She and her scientist colleagues handle between 3,000-4,000 blood samples a day. The 21-year-old is also an ambassador for younger students, speaking about her experiences at conferences, like how part of her job involves placing specimens on a robot. Handling the robot, however, as her workmates say, is probably the easiest part of her working life.

Jenny, who has Down’s syndrome, trained on the job with the Project Choice scheme at City Hospitals Sunderland NHS Foundation Trust before she won her paid post.

As colleagues point out, while she was learning about the intricacies of the path lab, she was also learning about everyday practicalities like getting to and from her job on time or how to interact in the workplace. This week, her achievements are recognised with an award to celebrate Adult Learners’ Week this week.

We are more used to hearing about the failings of the NHS when it comes to its treatment of people with a learning disability. Only today the NHS ombudsman outlined the catalogue of mistakes which contributed to the death of Tina Papalabropoulos, a young woman with physical and learning disabilities.

In March, the government’s Confidential Inquiry into premature deaths of people with learning disabilities found that 37% of deaths of people with a learning disability who died between 1 June 2010 and 31 May 2012 in the South West of England were avoidable. Put bluntly, patients with a learning disability died whilst they were supposed to be receiving treatment from the NHS.

If attitudes are to change among organisations which fail the vulnerable, one way forward is to make them more inclusive as employers so they reflect individuals from all walks of life. It’s one thing to stick up a learning disability awareness sign to help staff recognise vulnerable patients – as I spotted in my local hospital (it’s a good start) – but it’s entirely another to have people with learning disabilities on your radar as potential work experience students, interns or trainees.

Public sector organisations especially are encouraged to be more inclusive and diverse through their board membership and recruitment policies, with the Equality Act binding organisations to develop a more diverse workforce and uphold equal rights. But people with learning disabilities are one of most overlooked groups in the labour market with most employers unaware of – or perhaps put off by – the kind of support that learning disabled employees might need.

As Mencap points out in its campaigning material, people with a learning disability are more excluded from the workplace than any other group of disabled people. According to Mencap, less than one in five people with a learning disability work (compared with one in two disabled people in general), but at least 65% of people with a learning disability want to work. Of those people with a learning disability that do work, most only work part time and are low paid. Just one in three people with a learning disability take part in education and/or training.

Project Choice in Sunderland shows what can happen when employers take a more inclusive approach to recruitment and training. The scheme aims to provide work-based learning and experience for young people with learning disabilities.

The project starts with 16-21-year olds doing half a day a week work experience for six weeks. Students have one to one sessions with a mentor to help develop an understanding of the world of work. Next is an unpaid internship for four days a week in a work place and one day in college. Students, who can have up to three placements in the year, again have a named mentor and progress to working independently. Learning is reinforced in the classroom and interns undertake a work qualification like a Foundation Learning Programme or NVQ.

The final part of the scheme is, hopefully, an apprenticeship, job – as Jenny has proved – or further learning.

Jenny started with work experience under Project Choice and did an internship in 2010 when she left school. She spent a year as an intern in three departments: on a clinical ward where, among other things, she used her sign language skills to communicate with deaf patients, then in the hospital pharmacy and in the laboratory. She learnt on the job but also had one day a week at college learning about things like employment health and safety. As she says, “I have had amazing times since starting my work experience and have fulfilled my ambition of getting a permanent job.”

Project Choice isn’t, of course, the only supported employment scheme of its kind but it’s a pathway to work and training in a sector not usually open to people with learning disabilities. It’s the kind of scheme that can change attitudes both within healthcare and in wider society. We just need more like it.

* New figures released for Adult Learners’ Week, which ends on Friday, showed that the proportion of young people aged 17 – 24 taking part in learning has fallen by seven percentage points in the last year. There has also been a fall of six percentage points in the proportion of unemployed people participating in learning. The survey for NIACE interviewed 5,253 adults, aged 17 and over, in the UK 13 February–3 March 2013.

Young, free and single-minded

Young people who have helped transform their neighbourhoods despite are among those being celebrated in today’s Prince’s Trust annual awards.

Amid recent figures showing youth unemployment has nearly hit 1m, it is inspiring to hear how teenagers and young adults are determinedly pursuing work, training or volunteering, despite the kinds of experiences that would lead some to write them off as “hard to reach”.

The trust’s Celebrate Success event honours young people who, supported by one of the trust’s many programmes, have overcome challenges like homelessness or unemployment to make a difference to their communities or to the lives of others.

The community impact award in particular (there are various categories in today’s awards) recognises how young people around the country have breathed new life into a neglected area of a block of flats, launched a support scheme for young carers and turned a disused part of a children’s centre into a a play space. While their projects might not have led all of them into full-time employment, many are on a more secure path to independence.

Young people in Glasgow transformed a disused space (photo: Prince's Trust)
Young people in Glasgow transformed a disused space in Helenvale Flats (photo: Prince’s Trust)

A group of eight unemployed young people, supported by the Prince’s Trust Get Started programme, revitalised an area in a block of flats in the deprived east end of Glasgow. They created flower beds and benches, built a willow hut for children to play in and sprayed a giant snakes and ladders board on the ground.

The Caring Alone project helps support young carers.
The Caring Alone project helps support young carers.

Steven Bland was among the four young carers who created the Liverpool-based Caring Alone Support Service, backed by a cash award from the trust, for a Community Cash Award. They matched the funding with support from other organisations launched the online support support for young carers, offering advice and a forum for information exchange.

A team of young people from Birmingham helped improve Fox Hollies children's centre .
A team of young people from Birmingham helped improve Fox Hollies children’s centre .

While participating in the Prince’s Trust Team programme, 10 young people made a disused outdoor space at the Fox Hollies children’s centre in Birmingham into a beach play area. They raised the cash through donations from local businesses and activities including bag packs and car washes.

“People who have a learning disability have the right to good services, choices and a good life”

If only more people had the chance to develop in confidence like Laura Minett.

Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.

Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”

The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.

Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.

Laura Broughton volunteering at London 2012
Laura Broughton volunteering at London 2012

She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”

Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.

Laura Minett
Laura Minett
Laura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”

Laura Broughton
Laura Broughton
Laura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty.
I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”

The project that helps you “be” something

By Liz Naylor of the  charity Addaction
By Liz Naylor of the charity Addaction
When I first met Linda, she told me: “When I was growing up I couldn’t imagine being anything”.

I met Linda when I was delivering a training course aimed at former substance misusers who wanted to become “recovery champions” and better support their peers engage in that service.

Although Linda didn’t speak with any great volume, there was something so utterly powerful and authentic in her statement that for a second the room stopped and focussed upon her. It was not a statement of self-pity, or an attempt to claim the title of the bleakest life experience; it was simply a statement of fact – here was a 48-year-old woman who had never thought she would “be” anything.

I would later learn that Linda had “been” sexually abused from an early age by a string of boyfriends that her mother, working as a street sex worker, had brought into the home. She herself had “been” a street sex worker for most of her life. She had “been” trapped in misuse of heroin and crack on and off for the last 25 years. She had “been” the mother of a small child who died due to swallowing Linda’s methadone prescription.

At some point during the day, we were discussing recovery capital and specifically, the idea of people holding different levels of cultural capital. Many participants talked about how when they were young what they had imagined their lives might be – and the kinds of things that had got in the way of these ordinary dreams. I recall that none of the participants had held any particularly grand or unrealistic hopes, just the usual – jobs, children, and a place to call home.

I guess the power of Linda’s statement was that although she had been many things she had never imagined what she might be.

I am proud to work as part of Addaction’s London training team. It’s a small team of three full time workers and one part time volunteer. The major part of our job is delivering something called the Next Project.

This is a 12-week training course providing the necessary skills and training to people who have been affected by substance misuse and, since August 2010, carers or those affected by the substance misuse of someone close to them.

Some might call it a back to employment scheme that really works (imagine that!), which is fine, except quite a lot of the people who do the course have never even officially had a job. We call it a personal development course that supports the participants to make the kind of changes needed to move their lives forward so they can enjoy the kind of lives that meets their human potential.

Rather than work from the assumption that our trainees are “addicts” or “victims” or “burdened with care” – we work from the belief that our trainees are smart enough to be interested in examining their own behavioural patterns. It is, if you like, a psychology course based upon study of self and the personal changes made possible with this knowledge.

We know this works because since 2005 when the Project started to April 2012, 338 people have attended it and 261 have completed it, a success rate of 77%. This has increased to 87% in the last four years as the project has evolved. 9 out of 10 people finishing Next in the last four years have completed qualifications and gone on to further education/training and volunteering. 31% of those that have finished since 2008 are now in full-time employment. This figure increases steadily over time as Next graduates gain experience and confidence from volunteering and further study that enables them to start applying for jobs

The course is purposefully demanding and intense – giving the participants a real sense of achievement when they complete the course. Next is a proven success story, and is heavily oversubscribed, with waiting lists of up to six months. Referral is from the London boroughs (Islington, Greenwich, Wandsworth and Southwalk funding through Terra Firma) that currently fund places, and a place isn’t cheap at £2,500 but the impact of successful completion reaches much further than the individual (Addaction estimates that each person dependent on illegal drugs costs the country around £44,000 a year, compared to £2,500 for each trainee, for a nine month period). In fact the benefits will extend as far as their children, families and the wider community.

Linda secured funding to do the Project. She completed the course. She did not miss one single session. I don’t think she missed a single minute.

We watched Linda transform – her physical presence, body language, voice projection, intellectual reasoning, confidence, self awareness. It was a transformation that Linda initiated within herself, we provided the right kind of knowledge, support, (the occasional) challenge and encouragement. It was as if she understood the importance of the moment. The moment when she finally could see who she deserved to be.

* For more on the effectiveness of the Next Project and its employment outcomes, see this recent piece in the Guardian.

Unemployed to enterprising

Maria Ellingham had not worked full-time for a decade after having children. She then became a single parent who had the will to work but lacked the way. She was a qualified reflexologist and wanted to set up her own business, but she needed to find the confidence and to learn the skills of self-employment.

Yet in July, two months after taking part in a council-commissioned scheme, Ellingham launched her own reflexology business. A former account manager at a cosmetics company, she is among 54 people helped into employment or self-employment through Central Bedfordshire and Bedford borough councils’ building enterprising communities scheme.

Read more about the scheme to help people off benefits and into self-employment offers lessons for all service contracts on the Guardian local government network.

Maria with her children in her treatment room

The riots a year on: “If people see me as bad, I might as well be bad.”

Joe Hayman, author, British Voices
“Even though we’re not involved in gangs,” the young man from Hackney tells me, “the way people look at you just puts you down. No matter what you do, you’ll always have that bad name of a black kid from Hackney, so some people think, ‘if people are going to see me like that anyway, I might as well be bad.’”

Last summer’s riots, which began a year ago today, hardened my resolve to write an uncompromising book, British Voices, about our country from the perspective of its people. The comment above comes from a teenager I met in east London last August, not long after the end of the unrest.

The riots felt like an expression of something we had swept under the carpet. It seemed to me that failing to address the way that people in the country were feeling – including the sense that ordinary people’s voices often went unheard – would simply leave those feelings to fester once again. I wanted to approach the widest range of people possible and no matter they said, would present their opinions faithfully.

I started my research three weeks after the end of the riots. One of the first places I visited was Hackney, the scene of some of the worst trouble, and a lot of discussion focused on stereotypes of young people and a lack of opportunities.

“There’s a lot of talent in Hackney,” one young man suggested, “but there are no opportunities to uplift yourself. We’re left stranded; we have to fend for ourselves; so, if you see people with the nice car, you say, ‘I want some of that’. Our generation, we like fancy stuff but we can’t afford it – the riots were an opportunity to get things you know you couldn’t otherwise get.”

Was it worth the risk of a criminal record? “If there are no opportunities anyway,” he replied, “you might as well risk it.”

There was also anger towards the police. “They racially discriminate,” another young man said. “They search the black kids and leave the whites. They smashed my brother’s head against a windscreen, pushed me up against a wall, all for no reason. That’s why people rioted – they enjoyed having power over the police. They were saying, ‘If we wanted to take over, we could.’”

“It was great how youths were united by the riots,” one young woman said. “Gangs you wouldn’t expect to mix going up against the police together. It was great to see such spirit.” She went on: “It was wrong to burn people’s houses and family businesses, but the big shops all had insurance so what does it matter? I don’t see how it’s different from MPs and their expenses.”

I asked her whether the expenses scandal justified violence and looting. “No,” she said, “but it sets a bad example.”

It was an argument I heard again and again; indeed a sense of disillusionment, and alienation ran throughout the entire three months I spent travelling around England, Scotland, Northern Ireland and Wales. I went as far south as Lizard Point in Cornwall and as far north as the Shetland Isles, talking to over a thousand ordinary people along the way. They were disillusioned with different things and expressed their feelings in different ways, but the feeling remained.

As I travelled, the anger in the wake of the riots seemed to fade. It was replaced by a sadness, a sense that for all the social, economic and technological steps forward the country had made, a lot had been lost along the way: a sense of community, trust and responsibility to one another.

The riots may prove to be a one-off, a few days of violence consigned to history; and even if there is trouble again, the police will be better prepared to respond. But none of the underlying issues have changed since the unrest began a year ago. Indeed, since then the economy has deteriorated and national institutions – the media, the police, the banks and politics – have all continued to take a battering. Surveyed around the Queen’s Jubilee, 75% of respondents to a Yougov poll said that community spirit had got worse in Britain, chiming with my own findings.

I came home determined to use the lessons I learnt to found a new charitable trust, The Community Trust, aiming to address this issue. My confidence comes from the most powerful lesson from my journey: that, in spite of all the changes in our society and the challenges we face, the kindness and decency of the British people lives on.

I also picked up some valuable lessons on the types of initiative that the new trust might support to harness that kindness and decency and to build a stronger society.

First, projects bringing together people from different backgrounds, building social bonds, fostering trust and breaking down barriers between communities. Second, initiatives enabling people to help each other to navigate their way in an increasingly complex, difficult world, building the skills, networks and personal attributes needed to get through and to thrive.

Small but important initiatives such as these – and the willingness of ordinary people to support them – could foster a greater sense of community and citizenship in Britain. That might not solve our problems, but might help us to face them together, rather than turning in on ourselves.

The next generation of social entrepreneurs?

Amid the talk of troubled families and approaching the anniversary of the 2011 summer riots, it’s tempting for many to pigeonhole young people as feckless and hopeless. A Europe-wide project, however, aims to encourage a new generation of social entrepreneurs into the movement for social change.

There are an estimated 11m EU citizens involved in the social businesses and Brussels-based JA-YE (Junior Achievement Young Enterprise) Europe Social Enterprise Programme aims to motivate young people to find solutions to socio-economic problems, boost their employability and give them practical skills in enterprise and ICT skills.

Teams of young entrepreneurs aged 15-18 from 10 European countries have just competed in JA-YE’s (which is funded by businesses, institutions, foundations and individuals) first competition to create social businesses. with the entries judged different countries.

The winning enterprise Nomeno (“No means no”), from Norway, developed Safe and Sound, a bracelet with a warning whistle that helps summon help in an emergency. The team is donating profits to the to the Norwegian National Association for Victims of Violence. Second place went to Russian young people, for the social enterprise TrustCane to create advanced walking aid canes.

Think Fit, a team from Tre-Gib School, Carmarthenshire, representing the UK, came third. The project, aimed at boosting healthy living, created activity cards in different languages to encourage children to exercise. The social business also produces branded water bottles, T-Shirts, high-visibility tabards and bags. The young people have also created Welsh, French and Spanish versions of the pack.

I suppose the niggling concern I have is how easy it is for kids to access the kind of scheme run by JA-YE- not being an education specialist, I’m not certain how schools would have things like this on their radars. That said, with much focus on the lost generation of n’er do wells, it’s worth nodding anything that aims not only to raise aspirations, but teach practical skills to make young people more employable.

Caring and learning: the knowledge gap

As the 17-year-old unpaid carer of a mother with mental health issues, Holly is often asked – by her peers as well as by professionals – about the particular challenges of having a caring responsibility: “When I have tried to explain my situation, the questions have been, ‘Are you homeless? Are you on drugs? Are you being abused? Well things aren’t too bad then’.”

The reaction she often gets shows the low profile and lack of awareness about the particular challenges facing young adult carers. There are thought to be around 230,000 self-declared young adult carers between the ages of 16-25 in the UK but the figure could be much higher because stigma means many do not talk about their caring responsibilities.

Holly’s story is among the testimonies in a new report published today, Voices of young adult carers, stories of young adult carers’ experiences of caring and learning, to mark the start of Carers Week. The week-long drive raises awareness of the contribution the UK’s six million unpaid carers – as reported today, 40% of carers are put off seeking medical treatment because of the pressure of their caring responsibility.

The report that Holly contributed to comes from NIACE (the National Institute of Adult Continuing Education) and highlights the impact of caring on learning. Today’s publication focuses on young adult carers, young people aged 16–25.

Holly was 10 when she realised “my family did not function or behave the same as my friends’ families did”. Her mother rarely left the house, her brother often got into trouble with the police and her parents’ marriage eventually broke up. Referred to her local young carers service by a social worker, she lived part-time between her parents, moving eight times in almost as many years.

As the NIACE report shows, caring leaves young people with little space for school or college, let alone a social life or thinking about their adults futures. As well as having their education disrupted, it is hard for young adult carers to fit apprenticeships or work around caring.

As Holly explains in the report: “The house moves and disruption caused me to change college education halfway through and move to another college. Whilst at a continuous secondary school I was able to find support and the staff were genuine and made good links to my parents, always making sure I had opportunities. Staff even went out of their way to give me a lift home after any outside school activities, especially in the dark winter months. I achieved to my ability and started college where I built up good relationships with tutors. However, on my move to the college 70 miles away I had to restart the course, and although I tried to tell staff about my issues, I was left isolated and have fallen behind in my studies.”

Historically, provision has mainly focused on carers under-18, or adult carers and while NIACE says this is changing, there is still an awareness gap when it comes to knowledge about young adult carers. The situation is not helped because young people like Holly can find it hard to ask for help which, as today’s report suggests, adds to their difficulties with problems such as isolation, frustration, low aspirations and anxiety and behavioural problems. As well as the impact on the individual, there is an obvious knock-on effect on communities and the economy.

Recently, Holly’s mother has suddenly moved again, back to the area the family originally lived in and the teenager has, once more, started the process of changing college.

* More information on NIACE’s work on young adult carers, including resources to support learning providers in their work with young adult carers, is here.

Dads and disability

Zach and his father Kevin, who took part in research about fathers of disabled children published today, Dad & Me.
Imagine feeling under pressure to keep your child a secret from your employer. Imagine, at the other extreme, being abandoned by your friends for focusing too much on the needs of that child. What about if you felt you didn’t fully understand your son or daughter’s abilities, or felt so isolated and condemned to a life of hopelessness that you worry the stress is affecting your health or relationship?

This is the reality facing many fathers of disabled children, according to new research published today among 500 dads carried out by disability charity Scope and online community Netbuddy.

As one father told researchers during the survey carried out in April: “My friends have abandoned me because they don’t understand why I have to care for my child so much. And I know she won’t ever get better….My career, once promising to put me at number one in the world at my specialist area, is now going nowhere as permanent exhaustion means that talking intelligibly is a major achievement. But I love and care for my child. It isn’t her fault.”

The research, Dad & Me, aims to raise awareness about the role of male carers; while an estimated 5% of the population are carer dads, so far there has been little research into their experiences.

Today’s findings suggest that:
• 15% of dads keep their child a secret from their employers
• 40% do not fully understand their child’s disability (“Medical appointments are usually in the day and I cannot always get time off work to attend…this leaves me with less first-hand knowledge of what my daughter’s autism means and makes me feel inadequate.”)
• 72% say caring for a disabled son or daughter has affected their relationship with the partner with stress and tiredness among the causes
• 61% think mums are treated differently from dads

Deborah Gundle, Netbuddy founder and mum to Zach who has Angelman syndrome (pictured with his dad above), says: “We wanted to highlight the important role that dad carers have, but to realise the extent of the problems dads are facing has been overwhelming. Even I had not considered the extent of dads’ involvement – both emotionally and practically – and it is commonly the case that mothers are assumed to take all the responsibilities of caring on board.”

Dads feel marginalised as carers as the common view is that women cope better in the home, are listened to more and given more support and sympathy while the role of the father is to support the family financially.

As Richard Hawkes, chief executive of Scope, explains: “This survey shows that everyone involved in supporting families’ needs look long and hard at what can be done to support dads to play a part in caring for their children.” Hawkes argues that if the government is truly to create the family-friendly society it wants, it needs to do more to promote flexible working to support family relationships and finances. Scope also has a support group for fathers, which it hopes to expand.

The fathers in the survey suggest improvements which could help support them in their role as dad carers such as appointments outside working hours, specific help and advice sessions for dads and more employer awareness. Like all parents and siblings of disabled children, they also argue that better social integration – more opportunities for children to integrate with others in their age group in “everyday” social situations – would help.

While in theory parents of disabled children have a right to ask their employers for convenient hours and employers must seriously consider this as an option, there is a gap with reality, according to dads who took part in today’s survey.

Netbuddy has also recently launched a new forum for dads.

James’ story
James is a father to eight-year-old twins Thomas and Alice, who both have dystonic quadriplegic cerebral palsy, and to baby India. A PR consultant, he leaves the house at 6am and returns at 8pm, when his carer role kicks in. “Holding down a demanding job and being a carer can be a stretch at times,” he says. “I’m lucky enough to have a very understanding team of colleagues, but I do worry for dads who get held back in their careers because their employers feel they already have enough on their plate. People are sometimes denied opportunities to move up the ladder.”

James says most people assume that because he works, his wife does all the caring. The dual demands of work and the additional needs of his children means there is precious little time is left James and his wife to be together as a couple. “We have very little time to be together on our own and the pressures of caring for our twins and sleeplessness do take their toll. However, it has had a positive effect too – in building a strong bond through the difficult times we face.”

James would like to see more support for dads in terms of out of working day appointments and extra support services. “All support is during the working day so it’s not accessible for working dads. Asking for support as a father can be seen to be a weakness and a sign that we are not coping. There isn’t enough support or help available to us – and this is essential so that we can provide the best possible care when looking after our loved ones.”