Category Archives: Health

Abuse, Bullying, Disability, Health, Learning disability

Poor care for people with learning disabilities

March 25, 2015 Saba Salman Leave a comment

Robin Kitt Callender who died after missed opportunities to save her life (pic: Callender family)

By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed.

Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital.

An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died.

There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable.

Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer.

The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people.

There’s more of my piece in The Guardian.

Abuse, Bullying, Disability, Domestic violence, Health, Housing, Learning disability, Local government, Social care, Women

The hidden victims of domestic violence

February 11, 2015 Saba Salman Leave a comment

Beverley Lewis House is the only refuge in the UK that caters for women who have learning disabilities. Photograph: Beverley Lewis House

Barbara Davis’s abusive boyfriend burned her fingers on the stove when he discovered her packed suitcase under the bed and realised she was trying to leave. He had controlled Davis, 36, who has a mild learning disability, for years. He isolated her from family and friends, verbally abusing her parents until they stopped visiting. He locked her in the privately rented London flat they shared, goading her to kill herself. She recalls: “He told me to strangle myself with a wire … he wanted me to die.”

Davis (who eventually escaped) told her story to researchers from the Tizard Centre as part of a project to explores the experiences women with learning disabilities who suffer domestic violence. The work, which also looks at the attitudes and practices of professionals who support such women, is featured in my Guardian piece.

There are some shocking – although perhaps not surprising (given the low profile of learning disability as an issue) – facts included in the piece. Among them, that the UK has just one specialist domestic violence refuge for women with learning disabilities. What’s more, most police officers (often the first point of contact in a domestic abuse incident) do not believe that a learning disability makes women more vulnerable to domestic violence.

You can read the rest of the piece here.

The Tizard Centre project can be accessed here and information on Beverley Lewis House here.

Community, Health, Poverty, Third sector, Wellbeing

Innovative project redistributes surplus food to needy

December 18, 2014 Saba Salman Leave a comment

Food donated to FoodHub, for distribution to charities and food banks (pic: FoodHub)

Christmas – for some a time of year to overindulge, for others a desperate effort to feed the family.

With a huge rise in the number of people in the UK relying on food banks, a new London project that is making good use of food left behind when people moving house by collecting it and donating it to food banks and charities.

The organisers, a company specialising in overseas moves, explains: “MoveHub and their partners noticed that families were forced to just throw large volumes of food when they moved abroad – due to customs restrictions – and decided that instead, this food should find its way to people who really needed it.”

The project estimates that the food thrown away during moves across the UK could fill 160 supermarket delivery vans each week. While it acknowledges it “can’t reverse food poverty in the UK”, the scheme is an attempt to “contribute to the organisations helping people get back on their feet”.

Among the charities benefitting from FoodHub is homeless charity Centrepoint.

It is estimated that around 3.5m tonnes of food is wasted every year in the UK and this latest drive is a welcome addition to schemes like the “community supermarket” plan, under which unwanted supermarket food is already re-distributed to needy families.

* This is the last Social Issue post for 2014 – the blog will be back in January. Thanks to everyone who has read, shared, contributed to, commented on and got in touch over the last 12 months, your support’s very much appreciated.

Health, media & communication, Mental health, Music & arts, Third sector, Wellbeing

Mental health on TV: entertainment vs realism and sensitivity

December 17, 2014 Lol Butterfield 1 Comment

If someone’s arm was broken on TV we would see it bandaged up. If someone had diabetes we would see them receiving insulin. If we see someone had a heart condition we would see them wired up to an ECG machine.

So why when we see people displaying symptoms of mental illness do we usually see this depicted as violent or histrionic, with a focus on the challenge and not the solution?

Christmas is next week – a time of year that can brings an unbearable pressure to people with mental health issues. We are all very familiar with seeing mental illness portrayed in cliched, negatively stereotypical ways on our TV screens. The storyline involving the character Steve McDonald’s unfolding depression in the TV ‘soap’ Coronation Street is generating much interest currently .

I am watching closely as this storyline unfolds, not least because we at Time To Change are advising on this to try to ensure as much sensitivity and realism as possible.

Although only in the early stages of the illness, Steve’s behaviour is causing both consternation and confusion for those close to him, and not so close. People are trying to make sense of it all at the moment. Classic symptoms pointing to clinical depression can often be overlooked in the early stages. The programme is cleverly highlighting this and showing the insidious nature of the illness.

I believe it is all around finding the right balance between providing drama for the viewers but also ensuring mental health is not further stigmatised through lazy, damaging scriptwriting. It is a win-win situation for everyone to have mental health storylines depicted with responsibility, authenticity and maturity:
• viewers will gain more awareness of symptoms and treatment
• the programme will receive positive publicity for the research and efforts made
• a powerful anti stigma message will be ultimately delivered.

It is critical to present as authentic a picture of mental health symptoms and treatment as possible to de stigmatise mental illness. The media plays a role that must never be underestimated. It will educate and challenge opinions, it will inform. The viewers opinions and impressions are often influenced by what they see and hear on their TV screens. In advising on the Zak Dingle depression storyline in Emmerdale, I was at pains to reinforce how the illness not only impacts on the sufferer but also the family and significant others.

This is the reality.

The person who is ill does not usually suffer alone, their families/partners have usually cared for them before they seek help and continue to provide care afterwards. I will be watching the Coronation Street storyline to see how those near to Steve are effected by his own deterioration. It must also be realistic in showing the time span of the illness. It would be ludicrous for the viewers to see a decline into severe clinical depression undermined by a miraculous recovery within weeks.

Unfortunately drama that portrays a swift recovery only serves to misinform and mislead. Realism and credibility is then left on the cutting room floor. This is why good research is the key alongside learning the lessons of the past. Lessons need to be learnt and I strongly believe this will be the case in the Coronation Street plot.

Recent research by Time To Change has shown that attitudes are changing as a consequence of responsible media portrayals of mental health. We must not become complacent though and continue to build on the good work so far.

Coronation Street is a very popular soap. Many will be watching for the drama and entertainment element, while others will be scrutinising closely to look for a positive, realistic depiction.

I want these reasons to combine.

I hope nobody is left disappointed or disillusioned. I am excited by this storyline and so should others be. Excited because the storyline will, if successful, leave a seed of hope and a motivation for change in everyone’s minds. That seed will eventually grow into a realisation that when covering the topic of mental health, it is crucial this is responsibly portrayed in the media.

Disability, Health, Social exclusion, Third sector

Exhibition: from exclusion to empowerment

December 3, 2014 Saba Salman

Some striking photographs here of the social inclusion work in India and Africa by the charity Sightsavers. Shot by Guardian photographer Graeme Robertson, the images show “empowered lives and the impact of exclusion”, tying in with International Day of Persons with Disabilities and the international charity’s Put Us in the Picture campaign.

Health, media & communication, Mental health, Older people, Wellbeing, Young people

My campaign to change attitudes, one event at a time

October 24, 2014 Lol Butterfield

We have just ‘celebrated’ World Mental Health day (10 October). I, and many like me, hope that as each year passes so does the stigma and discrimination of mental health. Stigma impacts like a disease – if left untreated, the result is devastating.

Attitudes are certainly changing around mental health, although slowly. As pointed out by Time to Change, the mental health campaign I’m involved in, perceptions are changing. The National Attitudes to Mental Illness survey shows that since 2011, an estimated two million people – or 4.8% of the population – have improved attitudes towards people with a mental illness.
In addition, the data suggests that more people are acknowledging they know someone with a mental health problem (64% in 2013 compared with 58% in 2009). However nearly half (49%) of respondents said they would feel uncomfortable talking to an employer about their own mental health.

Anti stigma work has taken up a large part of my life in psychiatric nursing. And, although it sometimes feels like two steps forward and one back (as the research quoted above hints), the long and winding journey is worth the taking and the rewards are for the benefit of everyone.

I have seen the impact of stigma. I have also felt it. I have seen the destruction it causes people who experience mental illness and their loved ones. This is the motivation for my work.

The recent news about the impact of isolation underlines the need for more work along these lines. Both young people and older folk are affected by severe loneliness.

These issues provided the context for a talk I organised in my childhood village in July, and which I blogged about on these pages.

My talk was about the stigma of mental health and aimed to promote Time To Change. I wanted to raise awareness of the insidious impact of stigma and its long-term damage, and explore how we can all make a difference to the lives of others through our daily interactions. I wanted my message to reach across the village and, more personally, make a mark in the place where I spent my childhood years.

For me going back to my former home, which I left almost 40 years ago, was quite an emotional occasion. It had been the culmination of a life long ambition, a seed borne in childhood that had finally flowered. In the dark corners of my mind has sat the repressed thoughts from childhood of my father’s mental health issues, and the attitudes of others at the time to this.

Assembled in the room of around 50 people were faces from my childhood, alongside faces of the present. An eclectic range of people and experiences, young and old. Friends and family sat beside strangers. I will always be very grateful for the efforts they made to attend and help me to achieve my ambition.

Social contact and interaction is a powerful weapon in challenging ignorance and the myths surrounding mental health. Breaking down the invisible barriers we put up and accepting people as people, rather than defining them by their mental health condition is critical. The two-hour event was informal and interactive thereby providing the ‘safe’ space for those who wished to be open and share their personal experiences, or the experiences of others they hold close.

I started with a mythbusting quiz about mental health to highlight the misconceptions that exist, then spoke about my work in mental health nursing, my anti-stigma initiatives, and also my own experience of depression. I covered my work in the media with the TV soap Emmerdale, advising on the award winning depression storyline of one of the main characters, Zak Dingle.

I stressed it was my hope to encourage the viewers to empathise with Zak’s plight, to see him as being vulnerable and a victim of his circumstances rather than a danger to others, and criminalized

To contrast with this I also explained my advisory role with the character Darrell Makepeace in BBC Radio 4 The Archers. This character had not been received positively by listeners because the producer had decided to criminalise this character. Despite this, I stressed this at the very least ensured people were talking about mental health.

It was a success. I was at pains to ensure it went well because it meant so much to me. I have delivered many talks and presentations previously to large and small audiences but this one was more personal.

Since that summer’s evening I have spoken to people to gauge how things went. Did it make a difference? Has it changed their views? Inspired them? Where do we go from here? The responses have enthused me.

I intend to arrange a follow up event to build on this and plant another seed for the future. A seed for the young people, some who, sadly, will inevitably grow up with the same experiences I had.

Hopefully there will be some changes in attitudes resulting from that evening. It might seem to many just a single, small event, but if it can change just a handful of attitudes and encourage people to talk about mental health, it will be a success. Change drips slowly, but it will come all the same. One day.

Health, Older people, Race, Third sector, Uncategorized

Specialist dementia care for black and ethnic minority families

September 18, 2014 Saba Salman Leave a comment

“They should not suffer in silence”, says Amina Begum, a full time carer for her mother, of why we need more culturally specific dementia services for black and South Asian communities.

Speaking to me for a Guardian piece published today ahead of World Alzheimer’s Day on Sunday, Amina spoke about the contrast in support between when her father had Alzheimer’s (he died seven years ago) and today, as she cares for her mother, Jahanara, who has vascular dementia.

Amina is lucky; there is strong targeted support in Tower Hamlets for the area’s Somali, Chinese and Bengali communities. But while there are pockets of great practice, such as the Alzheimer’s Society’s monthly “dementia cafes” that Amina and her mother attend, such specialist care is not widespread. This is despite the fact that African-Caribbean and South Asian UK communities are at greater risk of developing dementia than the indigenous white population.

Amina Begum, a full time carer for her mother who has dementia (photo: Alzheimer's Society) — Amina Begum, a full time carer for her mother who has dementia (photo: Alzheimer’s Society)

Amina told me that as she hears her mother swaps childhood stories with her peers at the Sylheti-speaking dementia cafe, she sees another side to her 65-year-old parent. Jahanara is at ease and animated instead of being confused and frustrated. The pair are among around 200 regulars at the social club for the area’s Bengali community based at the East London Mosque. Continue reading the full piece here.

*Amina and her two daughters are taking part in the fundraising Memory Walk on Saturday 28 September which aims to raise money for research into dementia.

Abuse, Health, Mental health, Women, Young people

Why did the Salvation Army fail to act on my claims of sexual abuse?

July 23, 2014 Saba Salman Leave a comment

A woman who complained 16 years ago of being abused by charity personnel in the 1970s now wants an inquiry:

The Salvation Army failed to investigate allegations of historical child abuse, according to a woman who told the charity 16 years ago that four of its members had sexually assaulted her in the 1970s.

In 1998, Lucy Taylor (not her real name) told the Salvation Army that four men at her local branch of the charity in the north of England had abused her. Her story suggests she was groomed from the age of 10, assaulted from 12 years old and the abuse continued for eight years until she left the organisation.

Taylor says her complaints were not handled seriously either at the local branch, known as a “citadel”, which was at the centre of her allegations, or at the national headquarters in London. When she later approached police, an investigation resulted in two of the four men being arrested on suspicion of indecent assault. They were later released without charge. For legal reasons the Guardian cannot name the alleged victim, now in her 50s, or the men.

Taylor says: “I want somebody to take me seriously – listen to my problem and help me sort this out”. She adds of her alleged abusers: “I just want them to realise what they’ve done to me [but] part of me doesn’t, part of me doesn’t want them to know how it’s upset me and ruined my life.” Read the rest of my interview and report on the Guardian website.

Health, Mental health, Social exclusion, Uncategorized, Wellbeing

Campaigning in my community for mental health

July 16, 2014 Lol Butterfield 1 Comment

Each time I return to my childhood village the memories come flooding back.

Memories of football in the street and endless walks along rugged cliffs that are some of the highest in the country. A sense of innocence from another era now gone forever.

My native town is Staithes, a small fishing village nestling beneath cliffs on the north Yorkshire coast. A tourist attraction in summer, Staithes is synonymous with Captain James Cook who worked and lived there prior to setting sail to discover Australia.

My childhood growing up in the village was mostly uneventful but rocked by my parents’ separation and my father’s mental health issues. Mental illness was very much misunderstood in the village and this was no different to any other village in England at that time.

Over 50 years later, and nearer to the grave than the cradle, I now want to return to my roots to try to bring about change, however small, around attitudes to mental health. I want to raise awareness in the village of the stigma of mental health and how it impacts on the sufferer and their families. A stigma as dangerous as the high cliffs I would climb as a child and the raging sea that batters the village in winter.

Stigma and discrimination of mental illness exists in all villages and towns. Time To Change, England’s largest mental health anti-stigma programme seeks to change all that. I volunteer for Time To Change and use my qualified psychiatric nurse knowledge and and personal ‘lived experience’ to try to bring about more awareness, understanding and tolerance of mental health.

I feel confident that the event next Thursday (24 July) will be successful. Why? A sense of community exists to this day in Staithes, which I believe is part of being from North Yorkshire and who we are as a people. A down to earth friendliness, community spirit, and willingness to help others in time of need.

What I have organised is an informal evening in the village hall to raise awareness, educate, and de- mystify some of the negative and damaging misconceptions of mental health; SOS Staithes Opposes Stigma of mental health (the title “SOS” reflects the international distress signal ‘Save Our Souls’ which the village, a once thriving port, uses so I thought that would be an apt title).

I will also talk about my advisory work with Steve Halliwell, who played the character Zak Dingle in the television soap Emmerdale , to help craft the award winning depression storyline. This was done with the aim of making mental health depictions on TV more realistic and sensitive. People here in identify with Zak Dingle as the programme is Yorkshire-based.

So far the response to my evening event has been very positive. I have visited the village and left posters everywhere. I have spoken to some people I already knew and strangers who I can now call friends. They have been very open and honest about their own mental health issues or spoke of people they know and care for. This has enthused me all the more. I appreciate their being so open and trusting very much.

I wish I had possessed the same feelings of acceptance, understanding, and trust all those years ago as a child around my fathers illness. Small rural communities such as this are more isolated than the larger towns and cities and as a consequence people are often left feeling more alienated and lacking support. I often say as a child I did not understand the word stigma but I certainly knew how it felt.

My aim is simple. I would like the people in the village to be more aware of mental health issues and how mental illness it is indiscriminate. How it effects one in four of the population and that nobody is immune.

I would like the young people to see me as a positive role model and for them to be influenced to try to bring about change themselves in whatever way they can. I would like everyone to understand that Time To Change is a social movement for change and they can all play a part, no matter how small, in this ground breaking campaign.

The young people are the future of the village. They can all make a difference to the villagers of tomorrow as well as today by their words and their actions.

• SOS: STAITHES OPPOSES STIGMA of mental health. Thursday 24th July 7 – 9pm held in Staithes village hall – An informal evening of interaction and discussion around mental health. Free entry by ticket. Refreshments available and free promotional Time To Change materials. Tickets from Lol Butterfield on 07958064025, Veronica Foster on 07891607786 or members of the village hall committee.

The Social Issue