Last year there were more than 200 news stories published on the Learning Disability Today website, covering a multitude of issues that affect people with learning disabilities and those who provide support to them. Editor Dan Parton looks at the 10 most viewed stories of the year.
Please note, this top 10 is based on the number of people who clicked on the story – it doesn’t necessarily mean they were the most significant.
The news story with the highest number of views came way back in January and highlighted a potential new way to support people with learning disabilities who display behaviour that challenges.
The method, called Dimensions Activate, resulted in a 60% fall in behaviour that challenges, considerable increases in meaningful activity, active support and in staff job satisfaction, according to randomised control trials.
The research was conducted by service provider Dimensions in association with the University of Kent’s Tizard Centre and the Challenging Behaviour Foundation, and funded by the NHS School for Social Care Research.
Another practice-based news story was the second most read item. In June, social care organisation Turning Point published new guidance on caring for people with learning disabilities for healthcare workers.
The aim of the guidance is to help services improve the physical health of people with learning disabilities and their quality of life. It highlights early warning signs to enable workers to support people to access their GP earlier and help to avoid hospital admissions, escalation of health issues and support individuals to be as healthy as possible, according to Turning Point.
The third most popular news story from 2016 came from October, and showed that stigma and misunderstandings towards people with learning disabilities are still prevalent. A survey by Mencap and Ipsos MORI of 2,002 people, which aimed to gauge public attitudes towards people with learning disabilities revealed that only 30% said they would feel comfortable sat next to someone with a mild learning disability in the cinema, or during a show or concert.
In addition, 6% of people said they would feel uncomfortable using the same swimming pool as someone with a more severe learning disability and 27% of people think that learning disability is a form of mental illness.
A campaign – called Here I Am – followed this survey, which aimed to raise awareness of learning disabilities and challenge the misconceptions that some of the public have.
The launch of another campaign was the fourth most popular story on the website. In April, the 7 Days of Action campaign was launched by the family members of people with learning disabilities who are resident in assessment and treatment units (ATUs) with no date set for their move back into the community.
The campaign published a blog each day for 7 days, which told a different story of someone who has experienced life in an ATU.
People can become stuck in ATUs for years – 17% had been resident in one for more than 5 years, according to figures at the time – despite various strategies designed to reduce the number since the Winterbourne View scandal broke in May 2011.
Following this, the campaign organised another week of stories to highlight the issue in October, which included an update on what had happened to some of the people included in the first campaign.
Another story in the top 10 (8th) concerned the launch of a campaign to combat disability hate crime, especially those against people with learning disabilities and/or autism.
The ‘I’m with Sam’ campaign, led by not-for-profit service provider Dimensions, was backed by major learning disability and autism self-advocacy organisations. It issued a practical blueprint for change comprising 8 principal goals.
It is desperately needed too: in a survey of more than 320 members of the learning disabilities and autism community, 73% of respondents said they had experienced hate crime, with 53% adding they had experienced it in the past 12 months.
Crime also provided the topic of the 5th most popular story. In October, Noel Morrow, a temporary senior commissioner, was convicted of defrauding NHS Bromley Clinical Commissioning Group of nearly £145,000 and was jailed for two years and three months.
Morrow was convicted of Fraud by Abuse of Position, contrary to Section 3 of the Fraud Act 2006 at Croydon Crown Court. The sentencing judge took account of the fact that he had already paid back £93,681 to his former employer, money that could now be spent treating NHS patients.
The 6th most read story concerned an issue that has plagued the sector for many years: the inappropriate prescribing of psychotropic drugs to people with learning disabilities, or ‘chemical restraint’.
In June, NHS England and the Royal College of GPs launched guidance to support prescribing healthcare professionals to review inappropriate prescriptions for people under their care who have a learning disability and/or autism.
This came as NHS England and Alistair Burt MP, Minister of State for Community and Social Care, joined forces with 5 professional bodies and the Challenging Behaviour Foundation to pledge sustained action to tackle the over-prescribing of psychotropic drugs to people with learning disabilities and/or autism whose behaviour is seen as challenging.
At the time, an estimated 35,000 adults with a learning disability were being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification. Long-term use of these drugs can lead to significant weight gain, organ failure and, in some cases, death.
Whether this guidance will make a difference to the number of people who are prescribed drugs inappropriately is yet to be seen.
Cuts to local authority provision have also been ongoing for some years, and again featured in a number of news stories across 2016. In July, two families of children with severe learning disabilities won a judicial review against a West Berkshire Council’s plan to cut its short breaks budget by 48%.
On July 22, the High Court declared that West Berkshire Council did not properly consider its legal duties before deciding to make the cuts, and that the subsequent decision was merely to “rubber stamp” the first decision without being able to cure the original flaws. The judgement forced the council to rethink its plans.
The mother of one of the claimants, known only as DAT, who has autism and a rare neurodevelopmental disorder called William’s syndrome, welcomed the decision: “These services offer DAT support that we cannot provide him ourselves, because they allow him to socialise with his peers. Without short breaks he’ll be completely socially isolated. They really are life-saving, not just for him but for the family as a whole.”
Legal matters were also the topic of the 9th most read story, which concerned the Deprivation of Liberty Safeguards (DoLS). The Law Commission is currently reviewing the DoLS, after a Supreme Court decision in 2014, known as Cheshire West, changed the definition of what constitutes a deprivation of liberty.
However, the Cheshire West decision has led to a huge increase in the number of DoLS applications: councils reported 195,840 DoLS applications between April 1, 2015 and March 31, 2016 – the most since the introduction of the DoLS in 2009. There were 105,055 completed DoLS applications reported in 2015-16 – a 68% increase on the 62,645 reported in 2014-15. It follows a 380% increase in completed applications between 2013-14 and 2014-15 (from 13,040 in 2013-14).
The final story to make the top 10 showed that healthcare inequalities for people with learning disabilities are still a very real concern. Research found that cancer and coronary heart disease rates are a third lower in people with learning disabilities compared to the general population, but this may be because medical staff are missing the signs and not diagnosing them.
Researchers from St George’s, University of London, said this could be because people with learning disabilities are less capable of articulating their conditions, and so medical staff may miss some indications of illness.
Dr Iain Carey, from St George’s called for more research into the findings, but added that people with a learning disability needed access to high-quality chronic disease management in primary care.
Many of the stories in the top 10 relate to issues that have been concerning people with learning disabilities and those who support them for many years. But they also show that people many are not content with the status quo and are trying to change things – as the campaigns and legal challenges demonstrate.
These challenges will be ongoing in 2017 as well – and hopefully positive progress will be made in addressing them.