On 12th June, a small group of people met in London to demonstrate a commitment to make health parity a reality for all, and to establish how far away from this we currently are. It was run as day 85 of the #107days of action campaign as part of #justiceforlb.
We heard of people’s experiences that made it clear that there are huge inequalities in accessing screening and treatment. That, because people aren’t treated early enough, people die. That there is all too often little or no health promotion to people with LD, so expectations of health are lower.
People talked of the fact that people with learning disabilities are often not named as a priority in health plans, that a lack of joined up plans for other priorities and lack of mention of learning disabilities in those plans means that people are effectively overlooked. That cuts in support mean that fewer people may be involved in care, and that means less care and fewer champions to inform and support the health needs of certain communities. And we heard that the quality of care is very inconsistent; with some great care but frequent examples of appalling care experiences.
For example,, we heard of a man with learning disabilties in an assessment and treatment unit who was left unable to hear, with broken hearing aids because, “he’d only break the replacements if he got them”. We heard of women who were given insufficient support to attend breast screening appointments, who were then told that they might be screened again in three years time with no thought as to what might happen in the meantime. Without equal access to screening how can we possibly hope for equality of treatment or outcome?
We heard of people being denied access to GPs whilst on an inpatient unit due to an administrative argument meaning that someone would be charged £50 per visit. Then there was the issue of the hospital where the mental health unit and the general health unit are at opposing ends of a corridor. For reasons best known to themselves, doctors seem reluctant to go down that corridor. That standoff has gone on for years, psychiatry and general physicians blind to the services at the other end of the corridor, the people under their care unable to benefit from readily available services.
One contributor to the day remarked, “The heartbreaking thing is that there are so many pieces of poor practice that I could have chosen thousands”
And of course we remembered Connor Sparrowhawk, an 18 year old man whose death in an assessment and treatment unit was both avoidable and shocking. Connor’s death was a dreadful example of what happens when health is not considered in care settings, but unforutnately that is not an isolated incident. Something significant needs to change.
Importantly, the recognition of the problem does not only come from outside the medical profession. The BMA’s recent mental health parity report recognises the scale of the problem too, highlighting the appalling gap in life expectancy between those who have mental health problems or learning disabilities and those that don’t. A gap of 15 / 20 years is surely unacceptable. The report points to poor training and ingrained discriminatory attitudes. Of wasted opportunities and reluctance to make the reasonable adjustments that the Equality Act demands. And that raises a question for those of us from an outside perspective; have we become so used to the lack of reasonable adjustments or equal access to health that we challenge them less vigorously?
We must ask ourselves why the health issues of people in care settings are ignored, and what those with outside views of such settings do to change this culture. To ask why the views of family members are so often missing when they could inform care. To see what can be done to promote people’s ability to know what to expect from health, and for their calls for access to healthcare to be respected. And going back to the BMA document, how can we remind care professionals that it is their job to promote and support physical health?
Importantly, we decided that the feeling of defeat and powerlessness which seems to pervade some care settings about this issue was something we were unwilling to go along with. Instead, each person in the room committed to do something, that would raise and try to address the issue of health parity.
One of my commitments was to develop a forum for people to share examples of what they have done to make health parity a reality. To share the challenges and some tools that have worked. If you are interested in being inivited to join that group, contact me, email@example.com
Many thanks to Jon Wheeler of Pohwer and Andrew Carpenter of National Brokerage Network for their contributions and support in developing Keeping Me at the Heart of Care.