People with learning disabilities die on average 16 years earlier than their non-disabled peers, but to tackle this inequality will require changes in healthcare and it has to be led by the government.
The scandal of avoidable deaths of people with learning disabilities has been described as being on a scale with what happened at Mid-Staffordshire NHS Foundation Trust, but taking place every year. The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities, published in March, concluded that people with learning disabilities die 16 years sooner on average than the general population and more than a third of these deaths are down to people not getting the right healthcare.
Mencap chief executive Jan Tregelles’ damning assessment above of the report – which the charity says equates to 1,200 avoidable deaths every year – summed up the anger that many felt within the sector. But the findings of the Confidential Inquiry, while shocking, were not a surprise. That healthcare inequalities exist for people with learning disabilities was no secret, as reports such as Mencap’s 2007 publication Death by indifference and its follow-up 74 Lives and Counting have shown.
Indeed, going back to the late 1990s, Baroness Sheila Hollins – now a crossbench peer and emeritus professor of the psychiatry of learning disability at St George’s, University of London – undertook research into this in three London boroughs. She found that adults with learning disabilities were 58 times more likely to die before the age of 50 than the general population and that more than half would die of respiratory diseases, compared with only 15% in the rest of the population.
“To me what is more shocking is that we have known this for a long time and it has taken this long for it to be taken seriously by the NHS,” Hollins says. But, despite the Confidential Inquiry’s findings, the government’s response, thus far, has been lukewarm. Its response to the report, published in July, made a variety of recommendations, but, crucially, did not make any commitment to set up a national mortality review body – a key recommendation of the Confidential Inquiry.
“It is shocking that… we are still no closer to establishing a national mortality review body,” says Hollins. “This is absolutely needed because despite all the initiatives that has taken place there has not been very much improvement [in mortality] over 15 years. The case has been really well made as to why a national mortality body… to investigate avoidable deaths is needed.”
Better training for healthcare professionals
For Hollins, another area that needs to be tackled in order to eradicate health inequalities for people with learning disabilities is the training of doctors, nurses and other healthcare professionals.
“The Inquiry found that people with learning disabilities were presenting to the NHS at the same stage of their illness as other people but received fewer tests and less treatment and that’s why it is
thought people were dying earlier. That is shocking.
“It seems to me that this is because doctors and nurses don’t have the right skills and knowledge about what they are required to do under laws [such as] the Mental Capacity Act and the Equality Act. That means that all medical and healthcare courses must teach how to treat people with learning disabilities equally and how to communicate with them effectively.”
Hollins added that some courses focus on the medical aspect – the causes of learning disabilities and such like – rather than the more practical aspects of dealing with patients.
“What is required is that they know how to communicate, how to treat people with respect, how to ensure they’re not discriminating – unwittingly, often – against people because they aren’t making appropriate provisions for people to use their services.
“Also, they need to understand the requirements under law that they make reasonable adjustments so that people with learning disabilities can access services as other people do and can get the same outcomes from treatment as other people.”
Role of learning disability nurses
Hollins adds that specialist learning disability nurses also have a key role to play in hospitals, to provide specialist knowledge and support, but conceded that there is a shortage of such professionals in acute settings.
“Most learning disability liaison nurses in hospitals are only part-time,” she says. “Yet people with learning disabilities need that support 24 hours a day, seven days a week.”
Helen Laverty, health lecturer in the faculty of medicine and health sciences at the University of Nottingham, and a registered learning disability nurse, agrees that there are not enough learning disability nurses in mainstream hospital settings. “While we would love for there to be health facilitators in every DGH [district general hospital], we know there are not.”
Laverty adds that this is not down to a paucity of trained learning disability nurses –more newly-qualified nurses go into the independent sector and nontraditional learning disability services than mainstream settings – it is more that health trusts are not commissioning the posts. “There are nurses out there hungry for the [learning disability liaison] jobs.”
Yet learning disability nurses are highly effective in supporting general healthcare staff. “General nurses do amazing work in very difficult circumstances with the whole tapestry of humanity but if there is
a client group you feel less than confident with – and we know that unless you choose to work with and for people with learning disabilities then you do feel less than- confident working with them – then
people can end up getting sidelined, albeit often unwittingly.
“There are some very compassionate and caring doctors and nurses out there who need the help and support of a learning disability nurse to ensure their services are equitable,” Laverty adds.
Health Outcomes Framework
Meanwhile, there are initiatives that have been developed to help healthcare professionals to assess outcomes for people with learning disabilities, including addressing health inequalities. One such initiative is the Health Equalities Framework (HEF). This is an outcomes framework based on the determinants of health inequalities that provides a way for services to agree and measure outcomes with
people with learning disabilities, including their effectiveness in tackling health inequalities.
The HEF was developed by the Learning Disability Consultant Nurse Network. Equality think-tank the National Development Team for Inclusion (NDTi) has worked with them on its development. Sue Turner, learning disability lead at the NDTi, explains the rationale behind the HEF: “When we started working with the pathfinder clinical commissioning groups last year one of the first things they asked for was an outcomes framework. They said they thought learning disability services are important but they couldn’t prove what they were doing [was effective], they had no way of gathering evidence about them – and I think that’s true across the board.
“In a lot of areas if you ask about the sort of information services are gathering it tends to be about numbers on caseloads and activity levels but little on outcomes. Generally when I ask staff what they are doing, they describe it in terms of stories and positive outcomes on an individual basis but the HEF gives people a better way of being able to articulate what they’re doing as teams or services.
“We have used case studies with staff to identify how they were addressing various determinants of health inequalities. It showed that people are doing a lot more than they think they are. For instance,
if a health facilitator helps someone to access the doctor, who then deals with their health problem, that has lots of knock-on effects, perhaps with people being more confident about going out. It
demonstrates that there are a lot of other things going on.”
But initiatives such as this, on their own, will not deliver the change that is necessary to tackle the health inequalities people with learning disabilities face. For real change to happen government action
is needed, Turner believes. “We need clear messages from government that this [tackling inequalities for people with learning disabilities] is a priority because organisations are under such pressure – and there are a lot of new healthcare organisations out there, including CCGs – unless they are told learning disabilities is a priority it will fall off the agenda.”
Turner adds that Norman Lamb has committed to meet the Confidential Inquiry team and that the government will produce an action plan. “It is positive that he went on record saying that because unless it is taken seriously by government I don’t think we are going to get very far with local organisations. There need to be clear messages coming out from government that healthcare inequalities for people with learning disabilities are not acceptable.”
For more information about the HEF see: www.ndti.org.uk/publications/other-publications/the-health-equalityframework-and-commissioning-guide1