Disheartening figures in the 2015 Learning Disability Census and the Mazars report into Southern Health’s failure to investigate unexpected deaths makes me wonder if the changes needed to ensure people with learning disabilities have equal treatment is going to happen any time soon.
While reading the headline figures for the 2015 Learning Disability Census on Tuesday, I found myself checking I was reading this year’s report and not the 2014 edition. Some of the statistics are strikingly similar: 72% of people with learning disabilities had received antipsychotic medication in the previous month – 1% down on 2014. Meanwhile, the average length of stay in an inpatient unit in 2015 was 554 days – 7 days longer than 2014.
Meanwhile, and hugely frustratingly, the number of people in inpatient units was 3,000 – a drop of only 230 on 2014, which itself was a drop of 20 on the 2013 figures.
It is becoming clear that despite the raft of reviews, concordats and initiatives – the Winterbourne View Concordat, Winterbourne View Joint Improvement Partnership and Bubb Review to name 3 – since the Winterbourne View scandal of 2011, little has changed. People with learning disabilities or autism, many of whom have behaviour described as challenging, are still being dumped in inpatient units, often for long periods of time – the Census reported that 48% of people involved were also in the first one in 2013.
They are also often being sent far away from home, with the average distance a person was away from home increasing from 34.4km in 2014 to 38.6km this year.
For years now, politicians, commissioners and heads of services have talked a good game about the way forward, and for the number of people with learning disabilities in inpatient settings to be reduced and for them to live in their local community. But it still isn’t happening. Whether NHS England’s plan ‘Homes not Hospitals’ achieves this goal remains to be seen, but there is, understandably, a lot of cynicism in the sector, particularly among people with learning disabilities and their families who have been promised change and let down many times now.
These figures were released just days after the Mazars report into unexpected deaths at Southern Health NHS Foundation Trust was leaked to the BBC. The now-published final report showed that many deaths of people with learning disabilities were not investigated by the trust, and of those that were, many did not involve the family.
Again, people with learning disabilities and their families have been let down by the services that are meant to care for them – in life and in death.
Whether Southern Health is a one-off or there are other trusts that have employed similar practices is unclear, although there have been comments about ‘systemic problems’ in healthcare and that other services have may have employed similar practices (or not, as the case may be). Indeed, Southern Health’s chief executive, Katrina Percy, hinted at this in the statement released after the Mazars report was published: “We believe that Southern Health’s rate of investigations into deaths is in line with that of similar NHS organisations.”
If this is true, it is damning indictment of our healthcare system and something the government should urgently investigate.
But what the Learning Disability Census, the Mazars report and the myriad reports and initiatives following Winterbourne View show is that, in many cases, lessons are not being learnt from failures and bad practice.
You have to wonder why, especially as there is no shortage of examples of good practice out there. Is there the will to make the necessary changes? The perception remains that people with learning disabilities are viewed as second class citizens. For instance, there was the case of Andrew Waters, who had a two Do not Attempt Cardiopulmonary Resuscitation orders were placed on his medical records, giving Down’s syndrome as one of the reasons for its imposition, without the knowledge of his family. East Kent Hospitals University NHS Foundation Trust has since admitted breaching his human rights.
What needs to be emphasised is that everyone – whether they are old, young, have learning disabilities or not – should have the same human rights and same rights to treatment. And, if they die unexpectedly, their family should expect the same level of investigation to find out the reason(s) why.
Until this is ingrained in the culture of all health and social care services, people with learning disabilities will continue to experience inequalities and discrimination.
This is wrong. It needs to change. It has to change.
But will it? Given how many times we have been here before – there have been regular scandals for 40 years and more – you wonder.
But cynicism should not win, that way bad practice will continue to flourish. Rather, efforts have to be redoubled: everyone involved – from those with learning disabilities right through to government – have to shout loud and ensure that equal treatment for people with learning disabilities remains on the agenda and that those in power have to implement change.
From pushing for more learning disability-specific training for all health and social care professionals to campaigning against discrimination – two name just two off the top of my head – everyone in the sector must speak up - and carry speaking up until it happens, however long it may take.