Category Archives: Health

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.

The disability and employment gap: interview

Around 49% of disabled people in the UK aged 16–64 are in work, compared with 81% of non-disabled people, according to government figures.

The government has said it wants to narrow this gap (the figure has remained the same for decades) but at the same time its various policies and cuts relating to disabled people undermine this aim. A recent government green paper on work, health and employment, proposes to help at least 1 million disabled people into work, but has met with a lukewarm response from campaigners.

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 full interview is here.

Campaigner Jonathan Andrews on the talents and skills of autistic people

Jonathan Andrews was once advised to hide his autism from prospective employers. Instead, he is making his name by doing just the opposite.

The 22-year-old recently won campaigner of the year at the European Diversity Awards 2016 and talked to me about his work for a Guardian interview.

He’s involved in a plethora of awareness-raising projects, including sitting on the first parliamentary commission on autism. He also advised the government on its green paper on work, health and employment, which is out to consultation until later this month.

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.

The full interview is here.
You can follow Jonathan on Twitter @JonnyJAndrews

Unique art from survivors of brain injury

Artist Nick Mayers, a member of the Submit to Love studio collective.
Artists Nick Mayers, a member of the Submit to Love studio collective.

A unique art collective in London consisting of brain injury survivors is exhibiting its “unguarded, emotive” work for the first time.

The Submit to Love Studios, supported by brain injury charity Headway East London, is a creative space in Hackney for over 50 survivors of brain injury – barely any of the artists had practiced art before their injuries. The work of around 30 of the collective’s members is featured in a new exhibition that runs until 23 February at Stratford Circus Arts Centre.

MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
Artist Jon Barry's work, Lady in Green, in progress.
Artist Jon Barry’s work, Lady in Green, in progress.
Birds, by Laura Wood
Birds, by Laura Wood

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.

Freckle Face, by Chippy Aiton
Freckle Face, by Chippy Aiton
Elvis in London, by Cecil Waldron
Elvis in London, by Cecil Waldron
Creature, by Ad
Creature, by Ad

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”.

Three Chicks Going to a Do, by Tony Allen
Three Chicks Going to a Do, by Tony Allen

* 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

Designing for dementia

This year, 225,000 people will develop dementia – that’s one person every three minutes – and 70 per cent of people in care homes have dementia or severe memory problems.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051, according to the Alzheimer’s Society.

Despite the prevalence of the issue, a recent report raised serious questions over how prepared we are for the needs of the ageing population. And other research suggests dementia patients are subject to a care postcode lottery ; a further study published yesterday (World Alzheimer’s Day) showed there is no reduction in the use of antipsychotic drugs in dementia care, despite government guidance.

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.

In limbo: life for people with learning disabilities moving out of hospital units

Today's Guardian article
Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

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

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

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.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

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.”

‘She had a life worth living – she was comprehensively failed’

Robin Kitt Callender was 53 when she died following a treatable illness
Robin Kitt Callender was 53 when she died following a treatable illness

How do families of people with learning disabilities or autism feel they are treated by health and social care professionals? According to Karen Callender Caplan, who I interviewed for the Guardian, “You feel dismissed, you feel ignored … you have to gird your loins, you have to be ready to be bullish and persistent.”

Caplan’s sister Robin, who was severely autistic, had mild spina bifida and was partially sighted, died four years ago. She had been ill for over three months with intermittent vomiting and diarrhea, but the first her family heard of her condition was on the day before she died. In the months before collapsing at her Essex care home, the 53-year-old, visited her GP surgery six times and A&E twice. Yet her inflammatory bowel disease – a treatable illness – remained undiagnosed.

Despite says bereaved relatives must become campaigners, pursuing answers from disparate agencies.

An inquest last May at Walthamstow coroner’s court, in east London, concluded Robin died of natural causes contributed to by neglect, with expert witnesses noting missed opportunities to save her. However, there is be a second inquest this autumn as new evidence is to be presented about Callender’s medical care. The pre-inquest hearing takes places next week.

Caplan hopes the new development will reignite the family’s campaign for a “Robin’s law”. This would make it a criminal offence for a care home not to inform next of kin if someone they support, who lacks capacity to act in their own best interests, has an ongoing illness, and then dies. They also want there to be a duty on medical staff to inform relatives when treating such patients.

Equally important are more rights for the individuals supported so they have more control over their own lives. This is what the ongoing campaign for the LB Bill -sparked by the preventable death of Connor Sparrowhawk – would put in place.

Robin’s story is among the latest (but by no means the only) evidence that people with learning disabilities receive poorer care, are at higher risk of dying, and that professionals do not fully involve families in their care. To take just one example, data released to the Guardian under freedom of information showed that English hospitals investigated just 222 out of 1,638 deaths of patients with learning disabilities since 2011.

You can read the entire piece here.

* See more information about Robin’s Law on Karen’s campaign website or on Facebook

Mental health beds shouldn’t be so hard to find

Mersey Care's Clock View development, which helps boost local mental health provision
Mersey Care’s Clock View development, which helps boost local mental health provision

About 500 mentally ill people travel more than 30 miles for an inpatient bed every month, such is the scarcity of local provision.

My piece in the Guardian today reflects longstanding concerns most recently outlined in a report from the independent commission into adult acute mental healthcare, supported by the Royal College of Psychiatrists and led by ex-NHS chief executive Nigel Crisp. The report demands include a deadline of October 2017 to stop the practice of sending severely ill patients miles from home.

Some areas are blazing a trail, however, when it comes to boosting local acute beds. Existing examples of good practice include Mersey Care NHS trust’s £25m purpose-built, short-stay mental health inpatient unit, Clock View. Then there’s Tile House supported living project in King’s Cross, London, which reduces hospital admissions for people with serious mental health conditions, aiming to move them into independent housing and work.

For more, read the piece the full Guardian piece here

Why the NHS needs more district nurses

The ageing population combined with the ongoing drive to keep people at home, not in hospital, reinforces the vital role of community nursing.

Yet as figures from the Royal College of Nursing show, the number of community nurses working in the NHS in England have almost halved in a decade; from 12,620 in 2003 to 6,656 in 2013.

As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.

The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.

Read the full piece here.