Learning Disability Awareness and the day Blue Peter came to visit

If you happen to be in the market for a rather special apartment, you could try taking a look at this one in Wyfold Court. It’s on the market for offers around £1,800,000. However, be warned, its architecture was once described as ‘Nightmare Abbey’. Although Wyfold Court is now a prestigious collection of 11 luxury apartments, it was once the notorious Borocourt Hospital. For those readers under the age of 45, the name Borocourt Hospital is unlikely to mean anything. Some 38 years ago it was one of two hospitals that featured in the (still) shocking TV documentary, ‘SilentMinority’. The film was made by Nigel Evans, a lifetime campaigner for people with disabilities. The other hospital featured was St Lawrence’s Hospital in Caterham. 

Both these hospitals provided ‘care’ to 1000s of people living with a learning disability and/or a mental illness. The documentary highlighted the dreadful nature of these services, the abuse, neglect and ignorance by those meant to be providing the care. The film was made in 1981, which also happened to be the United Nations’ Year of Disabled Persons (IYDP). In many ways we have moved forward in our thinking; in other ways we haven’t. For example, IYDP aimed to ensure that there was an international action plan that promoted the equalisation of opportunity, rehabilitation, and the prevention of disabilities. Its slogan was ‘a wheelchair in every home’ – I think this rather quirky slogan kind of misses the point, but the well-intentioned approach was one where people living with disabilities have the right to take part fully in the life and development of their societies.

By 2006 a more sophisticated approach had been developed, and the UN Convention on the Rights of Personswith Disabilities was adopted – in the UK this was ratified in 2009. This Convention is a great deal more inclusive in its scope and the language used is considerably more appropriate. Given there are one in seven people in the world who have some form of disability (that’s over a billion people), a 100 million of whom are children, you would have thought the adoption of the Convention would mean that all should be OK in the garden. By now we should have learnt from the lessons of history and should be moving the equality agenda forward at pace. Well think again! 

Over the past couple of months in the UK, we have once more seen reports (from the Care Quality Commission and from the Children’s Commissioner) that tell of an increasing number of children with learning disabilities being admitted unnecessarily into hospital, and often hospitals that are far away from their home. The reports showed not only were these children stuck in hospital for long periods, (average time being six months) but the use of seclusion was wide spread. One in seven children had spent at least a year in hospital. This extended stay could have been avoided if there were appropriate levels of community-based support available. Last May, the BBC’s Panorama programme revealed yet again the physical and psychological abuse of people with learning disabilities at Whorlton Hall, an NHS funded but privately-run hospital. This programme came just eight years after a similar programme showing the neglect and abuse of patients at Winterbourne View. Six ‘care workers’ were given prison sentences for their part in the cruelty, and the police have arrested 10 workers from Whorlton Hall. 

Today marks the end of Learning Disability Week 2019. This is a week of awareness raising. Now I read many things over the course of a week and seek information from many different sources. I think, when it comes to health and care matters, I’m usually pretty well informed. I am slightly ashamed to say that I hadn’t recognised the significance of the date until one of my Twitter friends (thank you @kwelsh1) gave a shout out last Monday. Katy reminded folk that it was Learning Disability Week and posed the question: ‘what will you do to raise awareness?’, and I must admit that felt like a difficult question to answer. After some thought I decided I would use social media this week (and beyond) to help raise awareness (partly the reason for this week’s blog). 

The week also marks 100 years of Learning Disabilities Nursing. And on social media there was a great deal of discussion about the changes that have occurred over this time. At my University (University of Salford) the celebrations and events continued throughout the week. The School of Health and Society have a run a BSc Learning Disabilities Nursing and Social Work programme for some 25 years. This programme allows those that complete the course to register both as a Nurse and as a Social Worker. Places on the programme are much sought after. I have long believed that every nurse should have experience and knowledge of working with children, adults, people with mental health needs and learning disabilities. However, this is not the same as advocating for the creation of the so-called ‘generic nurse’ found in other parts of the world. 

Learning Disability Nurses like all nurses have the skills, attitudes and abilities to ensure a truly person-centred approach is adopted, so that individuals can achieve the best physical, mental and social health and wellbeing that they can. In so doing, people will be better able to fulfil their potential in all aspects of their lives. Despite its shortcomings, St Lawrence’s Hospital had one such example of how to fulfil one’s potential whatever the odds. 

Joey Deacon was born in 1920. He was born with severe cerebral palsy, which extremely restricted his mobility. His speech was almost unintelligible to most people except his closest friends. He was admitted to the hospital aged eight years old and spent his entire life there. In 1970 he started to write his autobiography. It took 14 months to write the 44-page booklet. In 1974 Radio 4’s Women’s Hour ran a feature on Joey’s story. This led to a documentary made by the Horizon programme. In 1981 Joey was featured by the BBC’s Blue Peter programme as part of the United Nations IYDP. They came to St Lawrence’s to make the programme. It was the same year that the ‘Silent Minority’ was made. In December of that year Joey died. However, whilst the Blue Peter programme didn’t quite have the desired effect (people laughed at his struggle to communicate and he became associated with pejorative name calling – ‘you’re a Joey’) his legacy of how to fulfil your potential lives on. And unlike me, Joey really did know how to raise people’s awareness of learning disabilities.